Thank you Jaydee I've been away. I will make an appt for GP to do all the necessay bloods and forward all the results to you guys as soon as I can get an appointment to have everything done.
I really appreciate all the advice I get from the Forum, again Thank you.
Thanak you SlowDragon, I'm only taking Vitimin D 2,ooo units daily. My Endocrinologist said to stay on 50 Levo as I'm in range, but I'm really going down the pan and feel so unwell. She's not ringing me until July and I've not had any recent Thyroid bloods done either.
Primary care saying stay on what meds I'm on. I am seeing Neurologist tomorrow because of altered sensations. Not holding out much hope though.
Majority of endocrinologists are diabetic specialists and often hopeless at managing thyroid patients
So see/contact your GP for further testing
you need FULL iron panel for anaemia including ferritin
Test early morning and avoid iron rich dinner night before test
Looking for ferritin as MINIMUM over 80
and retest B12 and folate …..if you haven’t been supplementing any B vitamins
Minimum for serum B12 over 500
Folate at top of range
Vitamin D - retest twice year when supplementing
2000iu unlikely high enough dose especially while on inadequate dose levothyroxine
Request next increase in dose Levo from GP
Request increase in Levo to 75mcg daily …..but because vitamin levels are so appalling only increase to 62.5mcg initially - cut 25mcg in half to add to 50mcg
Retest in 6-8 weeks
Almost all thyroid patients need to supplement vitamin D, magnesium and vitamin B complex daily
Initially likely to need separate B12 as well as B complex and important to start B12 a week BEFORE B complex
Significant number of thyroid patients need to work hard on improving ferritin and iron. It can take 6-12 months to improve ferritin levels
You will need to manage your condition and be pro active
Low vitamin levels tend to lower TSH, especially low ferritin
ESSENTIAL to maintain OPTIMAL vitamin levels by self supplementing…..if necessary
GP won’t prescribe vitamins unless you’re deficient
If vitamins are low but not deficient it’s your responsibility to self supplement to improve
We need good vitamin levels in order to be able to tolerate dose increases in levothyroxine
It’s vicious circle……vitamin levels are low because you are on inadequate dose levothyroxine
It’s difficult to tolerate increases in levothyroxine because vitamin levels are low
Get vitamin levels retested and work on improving to optimal levels
Vitamin D at least over 80nmol
Serum B12 at least over 500
Active B12 over 70 minimum
Folate at top of range
Ferritin at least over 70 minimum
You must have full iron panel test for anaemia including ferritin
Be prepared to push hard to get treatment you deserve
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Typically when adequately treated Ft4 (levothyroxine dose) will be 70-80% through range when tested (and last dose levothyroxine 24 hours before test)
Your last test Ft4
Free T4 (fT4) 12.2 pmol/L (11 - 22.6)
Ft4 only 10.3% through range
was test early morning and last dose Levo 24 hours before test
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Hi, Slowdragon hope you are well. I am still struggling with pins and needles in head and various parts of body. Levothyroxine been increased to 75mcg which I had a struggle to get Endo to do. She said to take 50mcg in morning the 25mcg later in the day???? I'm so confused as what to do.
GP saying 50mcg , Endo saying 75mcg. They are both USELESS!!!!
I am now under Neurologist and waiting for a spinal tap to rule out anything Neurological.
I've come to the stage where I don't trust any of the medical proffesionals.
Head tingling and weird sensations in the head and neck and face daily, all day for 1 year plus headaches
Terrible back and hip pain…
…Feet and hands always freezing
…
So don’t think I’ve had tingly feeling in my body, but the head tingling and weird sensations and headaches were one of my first symptoms I tracked - for about 7-8 years before diagnosis.
In those early days I used to Google “headaches” to try and see what was wrong with me. Had scans of my head, explored allergies, sinus problems. Was going to go to a neurologist next.
I was thinking about it just yesterday as I got a headache… mainly they’ve resolved with my optimizing free Ts. But in my symptom tracker I have several kinds of headaches I track - forehead/sinus pressure, base of neck throbbing, tingly face.
But I’ve thought of writing a blog or article so when early days/undiagnosed hashi/hypo people think they are dying of a brain tumor (our minds run wild when undiagnosed or suboptimally treated hypo gets the best of us) … that people can see that headaches are absolutely a hypo symptom… I’m just not sure why I could never find a source that pointed me in that direction.
Since then, on this forum there have been a number of posts where our common experiences with “headaches” are shared.
So I’m not sure about the all-over tingles … but as noted above you appear under-replaced and when you are it affects every cell and process in your body.
Do not take any B12 supplements until you have got the doctor to test your serum B12, your parietal cells and intrinsic factor and the others that they do. I was told by haematologist to be off B12 supplements for 4 months before he tested me. 50mcg thyroxine seems very low. You may be taking B12 supplements with no improvement, and therefore might think it must be something else, but if you have pernicious anaemia you will not get better by taking B12 tablets, because you cannot absorb it, you have to have injections. Taking supplements might boost your blood number, which will mislead the doctor into thinking it cannot be B12 deficiency because you are well in the range, and not bother to do any of the other tests. Very similar as to when doctors only test the TSH and if it is in range do not bother to go any further.
I have suffered with these symptoms during the last year or so although I have never had a problem before. In my case it was because I was underdosed although my blood results were ‘in the range’ I increased my levothyroxine and my symptoms have improved dramatically.
Thank you for reply. I too think 50mcg of Levo is too little, so I've just taken a quarter of 25mcg to start with, And then I'm going to take 56mcg together every day for 2 weeks then increase it more if I'm still unwell?
i would advise you to take the advice of Slowdragon the administrator who has set out a comprehensive approach in her response to you. Personally i think one quarter of 25mg is a miniscue amount and usually the advice is to increase usually by 25mg then test after six weeks, you should not change the dosage in this time until after you get your results. You need to get the vitamin levels up - low B12 in particular can cause neuropathy.
Thank you for the reply, I have taken the advice from SlowDragon and have requested to have all the bloods done with GP. I'm just scared about taking too much Throxine at once as I take other meds too. I was going to take a qurter every day for a week then up it to a half, then the full 25mcg?
Advice greatly appreciated, SlowDragon is a God send!
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