hi, I have Lyme disease and Hashimoto's and I'm currently taking combination T3 and T4 therapy ( after reading that this can be a game-changer for people who are chronically ill with Lyme and struggling to get better)
my previous TSH was 0.32, my T3 was just outside the top third of the normal range - but my T4 was below the ideal range
I adjusted the T4 up and T3 down a little to try to get a better balance - but my latest routine GP TSH test came back as 0.08 and as this is outside the NHS recognized normal range - the Doctor wants to speak with me.
they don't know that i am self-medicating with T3 and T4 and will likely see the low TSH as a problem - but i feel better than i have in years. no obvious ill effects.
the GP has not been very useful in treating Lyme or even diagnosing it ( took 4 years) and I'm not sure how they will react to the above.
has anyone here had this type of discussion with their GP in the UK ?
how do they react to self-medication?
will they stop prescribing the levo they currently provide?
i would rather be honest with them - but if its likely to cause a big problem i may have to think again
we have discussed low TSH readings before - and the consensus here was that once supplementing with T3 is not really meaningful - so i am not overly concerned about the TSH number in itself - but i will run a full thyroid panel in the next week or so to get a better overview of where all my thyroid hormones are before making any adjustments
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garz
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There is some concern that administering thyroxine in a dose which suppresses serum TSH may provoke significant cardiovascular problems, including abnormal ventricular diastolic relaxation, a reduced exercise capacity, an increase in mean basal heart rate, and atrial premature contractions.12 Apart from an increase in left ventricular mass index within the normal range, these observations have not been verified.13 Moreover, there is no evidence, despite the findings of the Framingham study, that a suppressed serum TSH concentration in a patient taking thyroxine in whom serum T3 is unequivocally normal is a risk factor for atrial fibrillation
I think you will have to be honest about the T3 as this would explain the supression of TSH. You could do a private thyroid panel to show them the results. Alternatively your GP may request one ..... if the write suspected hypER thyroidism on the request, the labs may well do TSH, Ft4 and ft3. You are right to lower the T3 as its improtant you stay in range with thyroid hormones........the TSH is pretty irrevalent if that is the case but your GP is unlikely to recognise this. I think your GP will want to refer you to see an Endocrinologist. Contact Thyroid UK for a list o thyroid frinedly doctors. You are allowed to choose who you see or you can go private. Either way you will need a GP referral. PM me if you want the name of the one I used. If you are bring referred your GP is less likely to want to meddle with what you are currently taking especially if your thyroid hormones are in range.
Email Thyroid UK for list of recommend thyroid specialist endocrinologists.........NHS and Private
tukadmin@thyroiduk.org
Office not open until after new year
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how thyroid hormones work
For me the most important thing for a patient is to be up front with a GP about their own steps they are taking to manage their condition.this is for several reasons:
1)
How can the GP know what to recommend if s/he doesn't have the full picture? Treatment is bad enough with out the GP being confused by blood test results that don't marry with what s/he is saying to you
2)
Not telling the GP what you are doing can result in breakdown of trust (yes I know, many patients have untrustworthy GPs) but that can be reason for the GP to de-list a patient.
3)
The NHS expects patients to be honest with their health care providers. The Handbook to the NHS Constitution says that we have a responsibility to Responsibility: ‘Please provide accurate information about your health, condition and status.’
The delivery of safe and effective care is reliant on good quality information. You are responsible for ensuring that information about you is accurate and up to date. gov.uk/government/publicati...
I have had several discussions with my GPs. One was downright arrogant, one begrudgingly agreed to what I had to say.
The important thing for me was to go into a consultation armed with facts and carefully and assertively. I explained what supplements I'm taking and why.
Sorry to hear you have chronic Lyme disease and that it has taken so long to get diagnosed. I know if it was my GP they would almost wash their hands of me if I admitted that I self treat. So I would probably say I had over done the Levothyroxine as that’s all they seem to believe in.
Often with Lyme disease there are underlying viruses which get activated so try to work on treating those too. When your thyroid is optimal ie you have enough T3 then your immune system will work better to get rid of the infections including Lyme.
Hope you can stay on the dose that makes you feel good. That’s what is most important- not the numbers -in particular the TSH is not v useful when on T3.
Tell your GP you have been reading a lot about your conditions as you wanted to be responsible in part for your own health, and how much better you are feeling. Tell him you have been reading medical papers, not just Google! If he asks for an example, you can quote the one SlowDragon kindly listed. Your GP will probably not know much about T3 apart from it is the Devils work, which they are trained to think.
I asked my GP why the body produces a hormone that he said I did not need, and to list another hormone naturally produced that the body does not need. Of course there is not one.
I also told him T3 works on "block and replace" which is not quite true, but they are used to that phrase, and he just nodded wisely!
I had him well trained, but he has now retired so I will have to start again with a stroppy young female GP if I ever see any of them again.
Your last comment had me laughing, it's a pity that it rings so true. I'm beginning to think that some of them behave like Pavlov's dogs when they see a low TSH.
Hi garz I’m on NDT so my TSH is suppressed. I’m under an NHS Endo and three other consultants. My Endo is quietly supportive. He doesnt write my blood results in letters to the GP and I think its to not raise eyebrows. They have all asked about NDT and I can tell they are thinking. I tell them my Endo is aware. No one in my care team has said anything negative to me at all x
Thank you all for the input and for the information in the links. It has been very helpful.
Yes, of course, I would rather be 100% honest with them.
but if you think the NHS manages Thyroid conditions poorly - you really have to experience the Lyme disease situation to believe it!
It is the number one vector-borne disease in the developed world affecting more people than aids and breast cancer combined and yet the vast majority of GP's haven't even done the Royal College of GP's 1hr awareness course on Lyme disease.
Yet for some reason, the vast majority ( i have seen many different doctors on this journey) seem to feel the need to pretend they know about things they simply do not, and present things as fact, that have actually been disproven many times over in the peer-reviewed scientific literature.
At this point, they are of very little benefit to me except perhaps saving me a few pounds by running basic tests and providing Levo on prescription.
I will patiently try to explain again the situation and how I come to be responsible for my own health to the degree that I am - try to keep them on my side - but of course, it's highly dependent on the doctor on the day.
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