Hello everyone hope everyone is well and in good spirits. Would really appreciate some feedback on this post.
So many things going wrong with my body over past months so I am looking for some explanations and support to try and resolve these problems.
I had thyroidectomy 1992 been on levothyroxine since then. Became really unwell 2019. Endo reduced dose from 100mcg to 75mcg February 2020 after reviewing my case whereby he claimed "You have been overprescribed thyroxine for many years" He went on to add ..... you are burnt out. I was never well on thyroxine over the years.
Anyway been on 75mcg since February and really unwell in all sorts of ways which won't go into as I sticking to experience of basal temperature of 34.8c, 35c, 35.2c, (consecutive readings in space of 3 hours). This occurred yesterday morning.
Symptoms were terrifying, daughter advised by NHS drop in centre to take me to A + E. Before going to a+e googled low basal temperature to find possible cause. Low and behold HYPOTHYROISM came up.
Still went to a+e to be checked out as I have other health problems.
But really I believed bloods would show hypothyroidism as the cause of low temperature reading !!!!! They did not?
Thyroid blood result: TSH 0.4. Range 4 _ 45
A+E doc declared those famous words that haunt us: YOUR THYROID RESULTS ARE NORMAL.
Has anyone else on this forum had this experience?
Have not mentioned all symptoms during this experience just the SCIENCE.
Would appreciate some feedback.
Love and light to all
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Firefl
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Strongly recommend getting FULL Thyroid and vitamin testing privately
Likely poor conversion and/or low vitamin levels
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I have used this site before and been guided by advice and links. So gratefully to everyone.
Regarding conversion of t4 to t3 vitamin levels are fine.
Have done a saliva cortisol test with Regenerus....awaiting results.
Antibodies ok according to NHS blood test yesterday but don't think they test for TPO?
Had a thyroid blood test March 2020 via medicheck after tyyroxine reduced from 100mcg to 75mcg
Medicheck: Doctor comments of results: TSH is in the normal range which suggests levothyroxine dose is correct. Dr goes on to suggest I discus results with endocrinologist claiming post cancer hypothyroidism is a very specialist area. Hmmmm.....I don't think so. Not being dosed now to suppress TSH
It could simply be because you are under medicated
Guidelines on levothyroxine dose by weight is 1.6mcg levothyroxine per kilo of your weight. Rare to need less, often if malabsorption may need higher dose
Dio2 gene variation is relatively common problem. (Lots of us who end up on T3 turn out to have this gene variation)
Oh so pleased you mentioned adrenals SD because I am waiting results for saliva cortisol test. Yep I worse in the morning...don't feel refreshed at all despite good nights sleep. Feel like walking dead. Cannot get up and just go....Got no fuel in the tank. After 4 in afternoon seem to come to life a bit but not that much.
My main concern is my brain function has deteriorated so much. It's feel like I have lump of lead in my head. It's very difficult having a two way conversation with people. It's also very difficult getting an answer when I ask myself a question????? Could faulty adrenals cause this?
As for conversion issue I will get gene test you pointed out to rule this out.
Going to see a new private endo next week, planned to discuss levo increase plus request a small amount of t3 but not sure this is such a good idea now due to adrenals being out of kilter. Think I read somewhere that adrenals needed to be in order before making changes to thyroid meds. Am I right?
Found out this afternoon from cardiologist high cholesterol has damaged my heart...only mild though. Of course being hypo has contributed to high cholesterol so if I cannot sort adrenal and hypo issue out I gonna have to take statins which I am so opposed to.
Thanks a million SlowDragon you been a great help.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Thank you SD for private message. I can't reply because I unable to verify my e-mail address as requested by this site. I press resend button so this site send e mail to my e mail address but I dont preceive anything. This not the first time this has happened. I have no idea how to sort this apart from creating a new e-mail address and that would be like asking me to walk on the moon.
Just read McPammy story....Eureka....what an inspirational story. Hope everyone on this site manages to put some petrol in their car and go, go, instead of scurrying around in Beatle city.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"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)."
(This would give Ft3 at 58% through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many people, especially after thyroidectomy
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
35 deg seems normal to me - I'm male and find my temp always goes down overnight - my wife seems to do the opposite she's cold at night and nice and warm in the morning. Quite a good mix really.
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