I have had the most crappiest day. In fact I’ve been crappy for months and months now. Physically and mentally poorly and I just feel somethings not right. I had bloods done on 4th November... (the GP surgery had sat on them for a month, not told me the results or been looked at by a doctor) Had an appointment today, but I left as deflated as when I went in. Because the doctor said the dreaded ‘they’re all normal’ words. I feel absolutely lousy. And please tell me, am I going mad? Or are these results not great?....
TSH - 4.11 (0.30-4.20)
FT3 - 3.9 (3.10-6.80)
FT4 - 15.4 (11.00-22.00)
I’m on 100mg Levo currently.
Thanks in advance x
Written by
HollieBerry
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I'm in the same boat of feeling crappy. Looks like your closer to the lower end of ft3 and ft4 and your tsh is almost out of range. I would say the more experienced users on here would say you need an increase in levo. I'm still new to this thyroid business, but to me it looks like everybody is navigating a treacherous maze filled with bad doctors and poor advice.
I know! it’s awful reading and hearing how many people are out there suffering like ourselves. I’m no expert either and don’t come on here regularly but the advice and support is always fantastic x
You're being told they're normal just because they're within range. However, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
Your TSH is at the top of the range, FT4 is 34% through range and FT3 is 22% through range. You need an increase in your dose of Levo 25mcg now and retest in 6-8 weeks.
To support your request for an increase in dose, use the following information:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
You can also refer to NHS Leeds Teaching Hospitals who say
pathology.leedsth.nhs.uk/pa...
Scroll down to the box
Thyroxine Replacement Therapy in Primary Hypothyroidism
can you tell me how you work out the ‘% through range’ also, is there a % that is considered adequate by health professionals? For example anything over 50%? I’m not great with numbers so explain like you would a 10yr old please 😂🙏🏼 thank you x
Result goes in first box, low limit of range in second box, upper limit of range in third box. Click Oblicz to calculate.
As for health professionals, unfortunately most have no idea of "optimal" levels, they think anywhere within range, even just one point up from the bottom for FT4 and FT3, and right at the top for TSH, is perfectly fine. Patients know better.
The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well.
Dr Toft has the right idea, quote above.
NHS Leeds hospital at least admit TSH over 2 is "likely under replacement".
The reference ranges are only guides. They represent a plot of results from around 300 people who don't have the condition. What they don't do is show your individual range.
The legal stance on guidelines in the UK is this.
a patient should follow guidelines unless there is a good reason not to. in our case the good reason is that there is a plethora of evidence to show that the current guidelines are incorrect
The only guidelines a doctor has to have reference by law to are National Institute for Health and Care Excellence (NICE) guidelines. But even NICE states
"Once NICE guidance is published, health professionals are expected to take it
fully into account when exercising their clinical judgment. However, NICE
guidance does not override the individual responsibility of health professionals
to make appropriate decisions according to the circumstances of the
individual patient in consultation with the patient and/or their guardian/carer.
In particular, guidance that does not recommend a treatment or procedure, or
that recommends its use only in defined circumstances, is not the same as a
ban on that treatment or procedure being provided by the NHS. If, having
considered the guidance, a health professional considers that the treatment or
procedure would be the appropriate option in a given case, there is no legal
bar on the professional recommending the treatment or on the NHS funding it".
Plus in the General Medical Council's Code of Practice states in Consent: Patients and Doctors Making Decisions Together:
If patients have capacity to make decisions for themselves, a basic model applies:
"The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.
The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.
If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion".
So a doctor may claim that s/he has to follow guidelines. If they do that is simply not the case. Both NICE and the GMC say that the doctor can use any other guidelines and even information brought to the doctor by the patient AND consult and discuss treatment options with the patient.
Vitamin B12 was 231 (180-640) and folate was 7.8 (3.00-20.00) but again, they said normal and no action necessary.
I’m really struggling with this fight against the doctors, felt terribly depressed for the last few months even to the point of feeling suicidal, and I told her that, she didn’t even acknowledge I’d said it. They’re really getting me down! I get in such a state of anxiety before I go to an appointment, then cry when I leave! x
If you do have any then list them to discss with your GP and ask to be tested for B12 deficiency and Pernicious Anaemia. Many people with a B12 level in the 300s have been found to need B12 injections.
You haven't given the unit of measurement for B12 but if it is pg/ml or ng/L (they're both the same), then according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
If you haven't got any signs of B12 deficiency listed in that link then you could supplement with sublingual methylcobalamin - one bottle of 1000mcg should be enough plus a good B Complex, containing methylolate and methylcobalamin, which is necessary to balance all the B vitamins when taking B12. Thorne Basic B or Igennus Super B are brands recommended here. Once the sublingual methylcobalamin has finished it should be fine to just carry on with the B Complex.
Folate should be at least half way through range so that would be 11.5+ with that range. The B Complex will improve your folate level.
Do not start the B Complex until further testing of B12 has been carried out and B12 injections (if found necessary) or supplementation has been started as the folate contained within it will mask signs of B12 deficiency and skew results.
Your GP will not be aware of these recommended levels, they are just satisfied if a result is anywhere within a range, but we Hypos need optimal levels.
I think your dose is too low for you and at the very minimum you should be on 125 mcg of T4. I am also concerned about your B12 levels as they are quite low too and nearly always show the same symptoms - no wonder you are feeling crappy.
Is there anyway, you can get a second opinion, perhaps from a different practice even? I would at the very least, challenge this GP/Dr as he does seem to be clueless.
Hope you are having a better day today and take care
Thank you JollyDolly. I really appreciate the support.
I’ve seen 4-5 different doctors at that surgery and none of them listened when I tried to tell them how bad my health is ruining my life. They make me feel like I’m a hypochondriac, but no one in their right mind would ‘want’ to have all these things wrong would they 😔x
No they wouldn't and you are not a hypochondriac - far from it. No one ever understands unless they have the same condition as us. In my experience, people tend to believe, I use my thyroid condition as an "excuse" rather than trying to understand what it is like to live with. Sad but true
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