Please could any of you lovely people advise me as I’m at my wits end over it ! My Tsh is undetectable and my other levels are normal but GP insists I’m taking too much Thyroxine ?
TSH 0.05
FT4 16 (12-22)
FT3 4.5 (3.2-6.8)
My FT4 has dropped it was 19 previously and my FT3 has always remained around 5
I have all the symptoms of Hypopituatury
Fast Heart Rate
Can’t regulate my body temp (shivering)
Fatigued
Anaemic
How do I stop the dr reducing medication and look into a problem with my Pituitary Gland ?
Thankyou so very much for any suggestions
Kazbe 😃
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Kazbe
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Thankyou for your reply Human Bean my GP is doing nothing about my iron I just supplement with iron tablets . The GP is only concerned with the undetectable TSH !! I’ve been on 100 mg of Thyroxine building up for 6 years so my dose is not high ? I’m confused 😕
Unfortunately, doctors are taught in med school that the TSH tells them 'all they need to know', and they are not taught about T4, T3 or hypo symptoms. So, if's very hard to get through to them that the TSH is actually a very bad indicator of thyroid status. What a doctor 'learns' in med school is sacred, and s/he is not going to look for any further enlightenment!
However, there are vague stirrings and the realisation that TSH is not the number to dose by, and you will probably find articles about that on diogenes profile if you read through his posts:
As to hypopituitarism, if you can give us your blood test results from when you were diagnosed, that will give us a clue about that. It's difficult to tell if there's a pituitary problems once you're on thyroid hormone replacement. And the symptoms you mention could easily be due to 'other things'. For example, far from being over-medicated, you are actually under-medicated. Your FT4 is only 40.00% through the range, and your FT3 37.84%! Both should be nearer to the top of the range.
I'm not sure that it's possible to test for pituitary problems privately, I think they have to be done by an endo. But, you could do a 24 hours saliva cortisol test for a start and see how well your adrenals are doing. Apart from that, it's a question of testing other pituitary hormones.
Of course, there's always a chance that the low TSH doesn't stem from a pituitary problem, anyway. It could be the hypothalamus at fault, and nobody tests for that. But, one step at a time, and I would say the first step should be cortisol testing.
Thankyou Grey Goose for your very detailed explanation and advice ! I will definitely get a cortisol test it’s 6 years since I had one of those ! I think I am going down the private route , because if my 3 different GPs have their way il become very ill reducing my Thyroxine from 100 to 75mg which is crazy ! They almost convinced me that I probably don’t need as my Thyroxine and that my Thyroid had righted itself !!!! 😕
Thyroids do not right themselves! Your numbers are now in-range because you are taking thyroid hormone replacement, not because your thyroids has magically Started making hormone again. Their level of ignorance is mindboggling!
Just tell them you refuse the reduction. Doctors are there to advise you, not dictate to you. You are not obliged to take their advice. Any change in your treatment should come about as the result of an informed discussion between the two of you. If they start going on about the (non-existant) 'dangers' of a low TSH, just tell them that you accept the responsiblity for your choices.
was test 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)
FT4: 16 pmol/l (Range 12 - 22)
Ft4 only 40.00% through range
FT3: 4.5 pmol/l (Range 3.2 - 6.8)
Ft3 only 36.11% through range
Results suggest you need dose INCREASE
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. "
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
Many thousands of thyroid patients have non responsive/sluggish TSH
Most important results are always Ft3 followed by Ft4
Essential to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels tend to lower TSH
If GP won’t increase dose Levo
Get full testing BEFORE considering booking consultation with thyroid specialist endocrinologist
Here’s link for how to request Thyroid U.K.list of private Doctors but also list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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
We see it all the time, very low or non detectable TSH with often lowish or barely mid range thyroid hormones, you then get your GP panicking and threatening to reduce your dose of Levo, which will just cause your FT4 and FT3 to go even lower and your TSH might not go back up anyway. Or it will very slowly rise.
Making you feel even more wretched. GP's seem unable to distinguish between TSH levels being suppressed due to genuine hyperthyroidism, with over range FT4 and FT3, which is a serious medical issue and suppressed TSH due to being on thyroid replacement but with low or mid range FT levels.
I'm sorry to say this but I feel GP's make these ill informed decisions to cover their own posterior rather than out of misguided but sincere, patient wellbeing concern.
Be careful who you approach to look at possible pituitary problem, it took me almost 20 years to get mine diagnosed as ordinary Endos just do not have enough knowledge to recognize problems with the pituitary. My pituitary failure was finally diagnosed after I saw a pituitary specialist recommended by the Pituitary Foundation. My pituitary has slowly failed over 10 years due to a head injury and encephalitis from chicken pox as an adult. I found that T3 was the only treatment that worked for me and now they've added hydrocortisone, growth hormone estrogen and I've added testosterone treatment. Heather
I’m so sorry to hear of you’re struggles with you’re pituitary, I do hope you are feeling much better now you’ve been diagnosed and got the correct treatment!
I have got no chance of getting the help I need with the NHS like you say they just don’t have the knowledge or the resources to treat you correctly. I am going down the private route but because of my thyroid it’s classed as a pre existing condition ! Thanks so much for mentioning The Pituitary Foundation , il see if I can find a Pituitary specialist.
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