I wanted to let you know about my recent success in case it can help anyone facing the difficulties I faced. So, I've no Thyroid, was gradually lowered to 75 (from 150 - was 86kgs) and then put down to 50mcg Levo, where I became seriously ill. Drs used TSH testing only and put my illness down to Long Covid, which annoyingly I probably had as well. After talking to the wonderful people on here I pieced together important information that would aid not only my recovery but also the future management of both my condition and the drug.
After a serious series of challenging appointments I convinced my current Dr to put my meds up to 75mcg Levo - during this time it became apparent that this Dr had not realised I had had a thyroidectomy. This information is highlighted on my notes now. I then worked hard to get an increase to 100mcg Levo and was amazed at the difference. My weight is now 76kg - dripping off but what an improvement without trying! My heart palpitations have gone, food absorption improved with reduction in awful peripheral neuropathy (tingling and numbness in hands, arms, face, legs and feet - across heart at worst stage) and exercise is doable - I've just bought a years swimming membership (now I'm back on 100 mcg Levo). However the Dr pointed out that my TSH was v low and she expected I would need a reduction in 8 weeks when she wanted to retest TSH.
No - I refused to go backwards and knew my TSH would be low - it always is. So I came on here and asked advice about how to manage this to get a TSH result that would prevent a drug reduction, but this was contentious and I respected that. However, I did lower my drugs v carefully and not for long, and got the result I needed - a normal TSH reading (NOTE at this test I did not request a T4 as this would highlight the anomaly) so I now have 100mcg Levo on repeat prescription - until the next blood test. What I also wanted to add here was that when I lower the levo or have had it raised, I notice the effects almost straight away - unlike the expected norm here where everyone talks about how long it can take to feel the effects of a dose change. Is that because I don't have a thyroid or am more sensitive. Even perhaps that I'm still not on optimal dose!
The purpose of my post is to give hope to others who may be in a similar position or in fact my own position (and not have the option of being able to finance their own meds and tests), that this is doable through subterfuge and obtaining good knowledge. During this journey, I have been given access to my records – something everyone can do – and the surgery system (EMIS) has provided very useful graphs showing that my T4 and T3 on the few tests done, had also gone down drastically despite TSH remaining same low level – this has been extremely useful in my fight as the Dr had never looked at these graphs, only the TSH. I could not have done any of this without the help and support of this site and administrators though, so thank you all for holding me during this journey. I have been shocked at the stress and anxiety that I have felt with the threat of my life being altered negatively by poor doctoring and an erroneous test that is a poor fit for many. Best of luck to everyone else on their journeys!
Tips:
Always go to the Dr with a list to aid your memory and make best use of the limited appointment time. I use headings of Current situation, Current Symptoms, Self-treatment/ current medication. You would be amazed at what the Dr may not consider or know in the little time they engage with you and your notes beforehand.
Join Emis or whatever system your surgery has your records on. Access this and study it.
Keep a diary or notes of symptoms and changes you notice. Including dietary aspects, dosage impact and other things such as energy levels and symptoms – tingling, shortness of breath, sleeping, stomach etc This can have a huge impact. On my own journey I discovered that I don’t tolerate soya, gluten and need to avoid starchy carbs where possible. All changes that have really improved my life. This diary/notes can be used to inform your list to take to the Dr.
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Strongly recommend for your own records you test FULL thyroid and vitamin levels at least annually
What vitamin supplements are you currently taking
Maintaining vitamins at GOOD levels improves conversion of Ft4 (levothyroxine) to Ft3 (active hormone) and can help increase TSH
were thyroid antibodies ever tested before you had thyroidectomy?
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
Testing options and includes money off codes for private testing
Thanks, Pennyannie - like you I agree, it shouldn't be up to us but the truth is we need to manage our treatment and future. I see it accross the board medically and the greater understanding that we as women (actually all of us but I work with women) have of how our bodies work and then how our own bodies work against that knowledge is really empowering. I also see how pressured the medical profession is and it is frightening. This site has been a revelation to me and I recommend it and HealthUnlocked to all who take my training. It really enables participants to fill in the knowledge and experience gaps they and their Dr's have. TBH I'm not surprised membership is growing - this is absolutely needed by many and provides a literal lifeline. It certainly saved me!!
Ditto and why I now give back when I think I can help someone else in a similar position to myself :
Looking back I replied to your very first question on here and seem to have continued throughout.
Sadly some doctors do not listen let alone allow themselves to question the current regime of incomplete blood tests to read and offer considered opinion on.
Add to that the fact that the current guidelines are not fit for purpose, though at every chance Thyroid UK and other thyroid forums in consultation with NICE try to advise and recommend change.
Sadly some doctors do not listen let alone allow themselves to question the current regime of incomplete blood tests to read and offer considered opinion on.
"Modern day medicine was founded by John D. Rockefeller (1839 - 1937) who knew nothing about medicine, but... he owned oil, lots and lots of oil. He told the world that all medical treatments should be based on petroleum. As a result he would become the richest man on earth. So he lobbied and bribed governments, health agencies, regulators, universities, and so on. He went on a mission to seize complete control over the entire worldwide medical industry and turned it upside down, from natural, truly healing care, that has virtually no side effects, to drugs made from highly toxic petrochemicals, that have many - often lethal - side effects."
Rockerfeller had to reinvent himself after the Ludlow Massacre (The Public Relations Industry was born).
"Rockefeller accomplished his mission by buying the entire medical education industry, so he cold dictate to millions of doctors and nurses what to do, while he himself had no medical background whatsoever, and did this for the sole purpose of greed.
The result of this criminal operation to subvert the worldwide healthcare system, is that medical doctors are not educated on how to help people recover and become healthy. They don't look for the root cause of problems, but are trained to tell people what petrochemical drugs to use to suppress symptoms.
That's why a medical education is not called "healing" but "medicine". Doctors are not educated on how to heal people, but they are trained to know what medicines to sell to their patients."
Today we have Be-Ill-Gates dictating, inter alia, Health Care. Currently as far as I am concerned, he's an as yet UN-indicted mass murderer - e.g. Gardasil and the Philippines and other things.
I think its worrying your lack of a thyroid gland wasnt immediately apparent on your records. Omitting this vital information or worse putting something in that wasnt true ( has happened to me) can change treatment options and outcomes.
And its only now medical records are becoming more widely accessible that we can see how often this goes on. I understand that mistakes are inevitable when dealing with millions of records, but once pointed out they need correcting asap.
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. "
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
Like you I’ve had a thyroidectomy. I’ve was on 75mcg with a low/normal TSH for over a year and really struggled with lack of energy, extreme tiredness, atrial fibrillation (AF) and stomach problems. It was only through reading posts on here that I began to wonder if I was under medicated as other people reported AF with hypothyroidism and my other symptoms tied in with being hypo, and I thought maybe I needed a dose increase. I also got my own blood test thanks to the forum so I can monitor T3.
I was referred to endocrinology as I had symptoms with normal TSH and T4 but because I mentioned AF and my TSH was low/normal he assumed I was over medicated and suggested I reduce my dose to 75/50 alternate days. I’m sure he hadn’t bothered looking at my notes and didn’t realise I didn’t have a thyroid.
I found his suggestion extremely worrying and was worried the gp surgery would reduce my dose based on this, Luckily my GP was supportive of me and open to considering symptoms alongside bloods. It does help to write it all down with bullet point headings. I just give it to him to read and it’s much faster than me explaining it!
I’m now increasing my dose to 100 mcg. Like you I notice the effects straight away but I find it takes a few months for my body to fully adjust to the new dose and for symptoms to reduce. It’s like in the first six weeks my body is using 75 but when it runs out it finds it has extra to draw on which stops it going hypo. Then after six weeks it realises it has 100 so has more to play with and can send the extra where it’s needed.
I haven’t reached the magic six weeks yet so am waiting to see what happens.
I’m greatly encouraged with your post as it’s given me hope that I’m going in the right direction and that things may improve so thank you for posting.
I am similar. I have a heart condition (many years ago refused further CHD medication because it actually worsened my symptoms) and I only found out recently by the blank look on a number of doctors faces, when I proposed a referral to cardio to update my diagnosis. Clearly it was deep within my notes. Not pride of place where it should have been. Similar blank look verging on disbelief, when I gave its name (coronary spasm). IMHO I think they thought I had made it up myself.
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7 ways to raise TSH without reducing thyroid dose.
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