Hi all, wanted some help/advice to enable me to continue at current good level of Levo. I am 8 weeks into 100 mcg Levo, having had a raise from 50 then 75. I have a total thyroidectomy and was very ill at 50 mcg Levo to the level that I was almost non-functioning. Found out Dr had not realised I'd had a total Thyroidectomy and was going by TSH. Recent test at 75 for TSH showed low reading and while Dr was happy to do a short test period back at 100, I still had nerve problems, brainfog and huge lack of energy at 75.
I currently feel great but know that the TSH test she will do will show low TSH and she will take me back to 75. It says this in the notes. I will argue the point and try to get her to continue with 100 - have already said I will take the risk of osteoporosis and heart problems myself (I obviously had this from them while they gave me 50MCG and made me so ill).
However, I wondered about trying to lower my dose in advance so that I could try to fool her - is this possible and has anyone been successful? I feel really good now - no longer putting on weight - infact it is coming off! I have energy, positivity and feel so young compared to when on 50 or 75. My heart palpitations have totally gone but I had them at 50 (a lot) and at 75. My BP is better too and more stable.
Any advice or experience of this would be gratefully received.
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CernCrystal
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at 75mcg it is 0.24 (0.27 - 4.2 range). T4 is 19.3 (12-22 range). I'm currently on 100 mcg. Looking back over my results I've always had low TSH - for many years untreated until the removal. I really don't think my TSH is a good reference point.
Alanna like the poster I have no thyroid. On 100mcg levo alone my TSH was under range 0.19 (0.27 - 4.75) while my ft4 was only 60% through range and my ft3 was a pitiful 17% through range. It is possible!
Don't knock yourself. It's not a common thing. I also lose weight and have a faster resting heart rate when I am under medicated. Opposite of a hypo really but then I was hyper till they took away my thyroid.Maybe I'm just weird!
It happened to me too. Before I had my TT. At first I lost weight without changing my diet . Had palpitations. I found out later that my adrenals picked up the slack of my failing thyroid. This was the beginning of my Hashimoto introduction. Not knowing that my thyroids where being distroid by my body. After a while my weight started to pile on with all sorts of symptoms. The point is that with low thyroids one can still lose weight.
CERN don't reduce your dose to try to Inc TSH . You can make yourself very ill and there is no guarantee that tsh will rise enough to satisfy a GP You need to go armed with a list so you don't forget anything. Point out how well you feel, the symptoms that have gone . Refuse to go by tsh alone. Ask what your actual thyroid hormone levels are. Point out that they are in range. State that without a thyroid the feedback loop is damaged so that tsh is not reliable alone.
Thanks - I'll do that. Really reluctant to mess with the drugs but also desperate to continue feeling good. Haven't felt this good in years. (7 years).
It takes a very long time for the TSH to rise after dropping low . And if the TSH it's low long enough it might not even rise at all. My TSH was very low being on high dose of T4 only.
And, if all else fails, just point blank refuse. She is there to advise you, not dictate to you. You are allowed to ignore her advice if you don't feel it's right for you. Doctors tend to forget this and think they are there to play god. Just say no.
Oh, I know exactly what you mean! You feel that something is being done to you, rather than with you. It's disempowering. You need to take the power back: your body, your health, your decision!
You've given me food for thought - the NHS has a commitment to "Delivering trauma informed care is core to the Long-Term Plan of the NHS." I am not being treated that way if my symptoms are not listened to. My Dr must work with me and not on me. Thanks! And it was traumatic being lowered to 50mcg and having such awful symptoms.
Remember to repeat that it was traumatic being put back on the starter dose., write it down with the symptoms you suffered. I take a slip of paper in with me now, I keep to 1 topic and have my questions and responses practiced. Recent 😇 locum took my slip of paper and worked through it with me 🙏
I hate to be miserable. But a doctor doesn't have to prescribe the dose of levo you want ( I know it's need, not want) but hopefully in this case they will see sense. Fingers crossed!
So crossed. My life is difficult with caring responsibilities so it is essential that I can not only feel well enough to drive but also support son and father. I have a much better chance than before I posted, thanks!
More for the list, your caring responsibilities and stability required etc
I had to take a train to work for about 9!months as I couldn’t stay awake in the afternoons and was dangerous on the road. Ok while moving but fell asleep at traffic lights, resolved on 100mcg.
Remind her there is no thyroid for the pituitary to signal to so TSH is not that helpful.
But, I'm pretty sure he's not allowed to reduce your dose without your informed consent. And, of course, there's always the old gambit: well, if you won't give me the increase I need, I will buy my own T4 on line and treat myself! That sometimes works.
The TSH was original introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and was never intended to be used as a measure of anything once on any form of thyroid hormone replacement as then you monitor and dose on the Free T3 and Free T4 readings and ranges.
The TSH reading relies on the HPT axis working well - your Hypothalamic -Pituitary-Thyroid feedback loop will not respond ' as normal ' as you haven't got a thyroid completing this circuit loop as your thyroid is gone and this loop open ended and not complete.
We generally feel best when our T4 is up in around the top quadrant of its range as this should convert to a decent level of T3 at around a 1/4 ratio T3/T4.
As mentioned in detail when you first posted optimal levels of ferritin, folate, B12 and vitamin D are needed for good conversion of T4 into T3 - so if all else fails and you feel you are up against that brick wall - you do need to have a Free T3 and Free T4 reading along with these core strength vitamins and minerals run before agreeing any dose changes that will negatively effect the progress you have made.
The TSH - especially when there is no thyroid does not respond in the normal manner,
It's not normal not to have a thyroid - and doctors need to understand we are not text book cases and ' just an under active' thyroid - but no thyroid and with no reliable HPT feedback loop nor TSH to rely on.
Thanks - going in my list to bring up with Dr. Not sure if it helps anyone but found out from my practice nurse that where you have had a Thyroidectomy they expect the Dr to order TSH and T4. Sadly no T3. Have just obtained a small amount of freelance work so as soon as financially viable I'm going to get private tests done. Thanks for continuing support!
if they don't test T3 - they can't know if you have a problem - and therefore not obliged to treat with T3 - Liothyronine which is a much more expensive treatment option, as is Natural Desiccated Thyroid.
Remember your own natural thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.
I'm without a thyroid and adding in a little T3 to a slightly lowered dose of T4 was like that ' light bulb ' moment with my brain engaged again, and I felt calm and positive with no anxiety.
Pennieannie, I always find it totally bizarre that doctors can expect everybody to function perfectly on T4 alone when a normal thyroid gland would have T1, T2, T3 and T4.
By what miracle is it that when someone hoiks out or destroys your thyroid gland are you suddenly able to function on T4 alone? Beats me!
When you are somewhere near a decent dose, adjusting by 25 micrograms is heavy-handed.
I mean, 75 to 100 was a 33% increase. (Or 100 to 75 would be a 25% decrease.)
Usually better to adjust by 12.5. For example, alternate 75 and 100 day by day. Or split tablets to achieve 87.5 every day. Or, of course, 100 to 112.5 rather than 125 if increasing.
Sometimes bigger adjustments are necessary, but often they are not. Possibly it is better to make two small adjustments than one larger one. Gives a time to check you are going in the right direction, get used to the change, and decide if another change is actually needed. Much better than changing by the lager amount and then reversing it. We've seen all too many who have bounced between two doses repeatedly.
and essentially test vitamin D, folate, ferritin and B12 too
What vitamin supplements are you currently taking
When were vitamin levels last tested
ALWAYS book early morning test, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
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 them and their families and carers or guardian. "
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
Get yourself a notebook and pen and put all this information down ready to refer to during your consultation. Write down a few questions you want to ask - write their answers down too.
Let the doctor see you mean business and that you expect to be treated as a partner in your condition - rather than someone who is just going to sit back quietly and ‘have things done to them.’
Besides - you know the levels where you feel good (write them down too 😉) why should you make yourself ill trying to bend things to suit your doctor. Good luck.
Thanks - I'm good with words so will write a careful synopsis of all the advice here that applies to my case (Thyroidectomy) and wpndered if it would be useful to share for the site as a resource.
Good idea. Gather all your evidence especially stuff like what tattiebogle has posted below and comments from medical papers that can support you. I remember trawling this website, books and the internet for information that supported my case - I was not going to be pushed into rai by anyone, I was happy to stay on long term block and replace because I felt well. I certainly didn’t feel confident that I could rely on my GP to keep me feeling well with T4 or whatever they prescribed.
I also found that recording how I felt on each dose change was a real help ( I used to just jot down a daily bullet point on how I was feeling ) because I was able to point to it and say ‘Look, that’s how I felt on x amount of levo, here’s how I feel on y amount - I need y amount’
You are unfortunately finding out how difficult that can be. So stay strong and keep us posted.
This is worth a read too .. i've just been reading it and even though its a few yrs old now , it contains some very useful references /quotes : healthunlocked.com/thyroidu...
You are feeling well which is what medics should be aiming for so point blank refuse to reduce your dose, because experience has taught you that your health will decline.
To prove your point insist on an FT3 test in addition to TSH and FT4
If FT3 is in range you are almost certainly not overmedicated.
Why?
Because T3 is the active thyroid hormone and for good health must be available to almost every cell in the body in an adequate and constant supply....roughly 75% through the ref range... but we are all different and that varies for each of us.
But, when correctly tested many patients with "normal" TSH actually have low FT3 .....told they are " normal" yet suffer badly from being undermedicated.
I'm totally convinced that many patients are being kept unwell because medics insist on focussing on TSH....it's a pituitary, not a thyroid hormone, and only ( roughly) reflects overall thyroid hormone level.....not individual hormone levels
We cannot be correctly treated by a vague tick box exercise such as TSH....it is absolute nonsense!
Sorry, I'm ranting again but this ignorance makes me furious!!
This is an excellent paper by eminent authors which any medic would be well advised to follow
In your shoes I wouldn't try to play their game by reducing your dose....you know what works for you and they need to take their heads out of the sand and realise their patient actually understands why!
I empathise....to function I need high dose T3-only which causes my TSH and FT4 to hit the floor and my FT3 to go into orbit.
My GP thought I was killing myself and wanted me to stop ( I self medicate) so I explained what I was doing and why supported by scientific evidence....eventually she understood and is now happy to leave me to it.
It's not a usual situation but what I'm saying is that there are medics who are confident and open minded enough to actually listen to their patient.
Delighted that you feel great....don't let an ignorant GP spoil that!!
Thanks - before I have appt with Dr, I now list symptoms, what I'm doing and taking to help and why I need higher dose - and copy it to Dr so she has it for the consultation (hopefully this helps reduce time and allows me to influence direction of such short a time). This also gives me a paper trail. I will also add information from the helpful posts here to a sheet I will take as back up to refute her arguments. and bolster mine.
Suggest you print out the NICE statement to be ready to give GP
Plus any other official NHS/NICE ones that support your current results
If you wear a fitness watch ……also gather up statistics from there …..
For example I am on levothyroxine plus T3 so my TSH is always suppressed at 0.01 but when adequately treated my resting heart rate drops to 50-55 ….if I lower dose and get TSH up to 0.02 ….my heart rate drops to 40-45 …..and becomes highly irregular
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TSH is now 'suppressed' at 0.08
Not ovulating but thyroid optimal?
Titration of Levo halted at 75mg because TSH is 0.09 in recent blood test
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