Hi all I am new here but would like to get some help with my results, done at an NHS Hospital on 23/07/21 (after a two month wait for endo appointment)
I have some concerns regarding a drop in my medication over the course of time, like the past 12 months my GP has been telling me to reduce my Levothyroxine from 225micrograms (I felt great, energetic, nothing could stop me, even with a physically demanding job) to now asking me to reduce to 100micrograms a day!
It has gone down progressively in steps and so has my energy levels, despite eating more healthily, I was overweight last year at 16st, now I am under 14st, so that is at least good progress. I am not taking any vitamin supplements as I am trying to find the best source for good quality, don't want to buy just cheap vitamins from supermarkets etc.
As my energy levels are not as great as they once were over a year ago and wondering if it is my age (53 post menopause) should I consider this a cause in addition to my lower Levothyroxine medication, or is the lower Levo a cause for my decreased energy?
Both my GP and the Endocrinologist seem to think I have a suppressed TSH and therefor feel the need to reduce my dosage which doesn't make sense if makes me feel worse. In a letter received from the endo states the my symptoms are not typical of hypothyroidism, despite having no thyroid gland (congenital).
One final point to make is that I had to change pharmacy since February this year which meant a change of brand, gone from Mercury Pharma to Almus and I am not sure of that could interfere with anything.
Here are my blood results, can't do private as I am not in a financial position to do so.
Thanks in advance for any insight or suggestions you may have.
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Black_puma
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Low Ft3 leads to low stomach acid and poor nutrient absorption and low vitamin levels as direct result
Likely to also have low B12, folate and ferritin
Have these been tested
Vitamin D now low as direct result
How much vitamin D has GP prescribed
Aiming to improve vitamin D to at least around 100nmol
Request/insist that GP test folate, ferritin and B12
Low vitamin levels leads to poor conversion of Ft4 to Ft3…..leads to high Ft4 and low TSH
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)
Hi thanks for the quick response, as of yet no prescription for Vitamin supplements, the endo informed me in the letter that my GP should take care of that, but I don't know when this is going to happen. I am now really annoyed with the GP and Endo's attitude towards my decline claiming that my symptoms are not related to hypo, but as you have explained it makes perfect sense why I feel so lethargic, but another problem I didn't mention before is that my sleep has been affected too, which adds to the problem.
I did ask the GP to test for more than just TSH, but said he won't as it is now in the hands of the Endocrinologist (claims can't be tested for anything other than TSH)
I would like to add what was being said by the endo in response to my request to have t3 added to my prescription...this is what I got
Sounds like current endocrinologist might be diabetes specialist
Ft3 is now too low
Print this out give to GP and request vitamin levels are test
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
".. because she believes that T3 is the active form.... " wonder what he believes it is ? they just can't resist it can they.. even with a provable, well known fact ,,, they still have to chuck in a little jibe about it being a 'belief'!
Also .. in relation to being 'biochemically thyrotoxic' .. well yes fair enough .. you are .. the over range fT4 shows that... but
... i had fT4 going up to 22.5 [7.9-14] 242%
... so dose was reduced to 100 (from 112.5)
... and i developed very SPECIFIC symptoms of hypothyroid.. (constipation , slowed digestion) .. even though fT4 was still over range at 19 [7.8-14] 181%
... dose increased again to 112.5... constipation resolved .
So it might not be 'logical' .. but an over range fT4 does not rule out having symptoms of hypothyroidism .. specific or not .
He's very adamant about your symptoms being 'unrelated to hypo' isn't he ? .. i wonder how he manages to be quite so certain when, in his own words, they are 'non specific' ?
How then, can he be so sure that you would be 'quite unlikely to get any benefit from T3 treatment' ? ... especially since it's so bleedin obvious that your ft3 level is pants.
So fine .... get you to improve vit's first , that's fair enough.
Make sure it's not the over range fT4 that is causing the symptoms by reducing Levo further . .. well i can see his point ... might be worth a go .. just to prove the point.. (and you never know .. i once didn't want a reduction but actually it did help) but i suspect it might just make you worse then you are now .
But surely after that, he ought to be at least considering adding some T3 to see if it helps.. regardless of how unlikely he thinks that is.
oops . caught me being institutionally sexist ... apologies to her /them. Yes you're quite right... women can be condescending useless articles just as well as men can.
Either way, no excuse for such condescending attitude towards a patient, very unprofessional!I was very cross and upset when she later left a message telling me to reduce my dose to 100mcg a day!
She was trying to scare me into thinking I was over medicated.
I don't know if I should make a formal complaint about her, wether that will achieve anything?
dunno .. my personal view is that if they were open minded enough for a complaint to make any difference to their attitude, then they probably wouldn't have been such a **** in the first place. And that the medical profession is well set up to protect it's members.. even when they've made a clinical mistake that you can prove. ....So not much chance of anything useful coming from subjective issues like attitude, on such a controversial subject as thyroid... they'll just say their opinion and treatment plan is backed by NHS guidelines for thyroid treatment and you didn't accept it cos you're under the mistaken opinion your symptoms are thyroid related, and you've been getting mistaken ideas about unproven treatments from the internet etc.
But then i'm not very good at complaining effectively , i'm English.. i usually bottle up my resentment and let it all out at inappropriate moments instead .
Maybe you can write a better 'snotty letter' than i can
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.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
Hm, that's interesting, the endo said during consultation that she wanted me to take 125 and 150 micrograms on alternate days, but she had me do a bloodtest after the consultation (not early in the morning by then of course)She left me a message telling me to reduce to 100 daily, which I wasn't happy with. However the bloodtest was done on an empty stomach, but much later which would affect the tsh level, which both the GP and endo are too fixated on.
Your FT3 is too low, you may have reduced T4 to T3 conversion because of a genetic disposition and/or because you are taking too much T4 in any single dose. Initially you could try splitting your levothyroxine doses into 2, 3 or 4 portions. For me this holds up my T3 levels which decline significantly if I take single doses of the total levothyroxine replacement every day. If this doesn’t improve your free T3 you are a prime candidate for liothyronine T3 replacement and then 100 µg of levothyroxine (+5 to 10 µg liothyronine) may indeed be the right amount of levothyroxine!
Sounds like you could definitely do with a T3 Liothyronine trial at the very least. Your results for T3 are very low. My NHS Endocrinologist said exactly those same words ‘she would not benefit from T3 medication’. It’s code for they won’t go down that route due to massive price hikes by the Pharma supplying our NHS. You would benefit from it for sure with those results.
When I finally got my T3 medication trial privately it changed my life in many positive ways. It is not that expensive going private. I thought it’d be thousands all I paid to be diagnosed snd treated was £650. A small price to feel youthful and full of energy for the rest of your days.
Unfortunately, £650 is a small fortune to many many people, and would exclude them from going down the private route. I paid c. £200 for a private consultation (which turned out to be a complete waste, from a rude man) and I couldn't really afford another, despite being desperate to be well again.
I can see why they reduced you from 125 to 100 as you’re over range on t4. (You said you were on 225, guess that was just a typo?) Anyway, if I were you I’d be asking for a trial of T3 as for me I need my T3 a lot higher than yours and it will go down with your lowering your dose. Some self source T3 if no luck with docs.
I believe I was on that dose (225mcg) over a year ago, but I was a lot heavier then, 16st but I'd have to check on records to confirm. Then I started losing weight realising I was too heavy, now down to 13st and started having some issues with my back due to lack of core strength and overuse in work, physically demanding work, lot of repetitive movements etc, I am now working on improving my core strength as the pain in my middle back is crippling me, I have spoken to my employer (small family business) on a few occasions to see if they can raise some of worksurfaces but as of yet nothing has been done. Unfortunately due to the 'pandemic' situation business is not doing as great as previous years so I am on less money than before and barely scraping by, so going private is pretty much out of the question right now until the situation improves (I can hope, but not too optimistic as yet) I know my employer is working hard at finding ways to improve business but very slow progress. I have an appointment with the physio tomorrow morning about my back pain, so we'll have to see what happens there and then. If anyone could PM me for sources of T3 that would be helpful, I'll try and pick up some vitamin D today to get started. Whilst at the surgery I'll try find a way to get the GP to get me tested for vitamin D, B12 folate and ferritin as that is urgent. I am just recovering from flu this weekend, I guess all the stress has finally gotten to me, I don't get ill very often at all, so this came as a nasty surprise!
I am very grateful for your insight and support, It will encourage me to keep going in the right direction!
I think that the fact that you have congenital hypothyroidism and were well on NDT throughout your " growing up " years goes to show that there is an alternative to T4 only medication that worked and should have been maintained throughout your lifetime.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcionin plus a measure of T3 said to be at around 10 mcg plus a measure of T4 said to be at around 100 mcg. and in my opinion the obvious choice.
NDT is pig thyroid dried and ground down into tablets, referred to as grains, and contains all the same known hormones as that of the human gland.
I too haven't a thyroid any more but mine was burnt out in situ with RAI in 2005 after being diagnosed with Graves Disease and I now manage lingering Graves, thyroid eye disease - caused by the RAI and hypothyroidism.
I was treated with T4 monotherapy and ended up in an ever decreasing circle of wellness, when my T4 dose was reduced because I was seen as overmedicated, and " hyper " although " hypo " because my TSH wasn't in the range, and at 0,01, if I was to be allowed to be anywhere near being well.
I too was dosed and monitored by someone fixated with a TSH level and blind to my T3 / T4 levels needing to be in balance and in the upper quadrant of the ranges for wellness.
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body. T3 is said to be about 4 times more powerful than T4 with the average person needing to utilise / need / convert / metabolise around 50 T3 daily, just to function.
The accepted conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 - T3/T4 - with most people feeling at their best when conversion comes in at around 4 or under.
So to find your onversion ratio you simply divide your T3 into your T4 and I'm getting you coming in at 7.80 so showing a way out of range conversion problem.
The logical solution, since you do not have a thyroid is to reinstate NDT or add T3-synthetic Liothyronine alongside a lower dose of synthetic T4 - Levothyroxine.
Ideally both T3 and T4 should be balanced, in around a 1/4 ratio T3/T4 and both these vital hormones in the range.
Optimal thyroid hormone conversion, irrespective of what treatment option you need to take needs optimal levels of ferritin, folate, B12 and vitamin D and you may find you need to supplement these yourself., as you may well be in the range and considered " fine " - but not for someone who hasn't a thyroid and taking hormones that need a strong, underlying core strenth of support.
I don't doubt you felt better on a much higher dose of T4 and it does seem, even when on T4 monotherapy and well, the computer dogma is followed blindly with little or no understanding of the patient's history nor the human body.
Sleep issues may have other causes. Radiation from cellphones, wi-fi routers, smart meters, antennas, or even 'dirty' electricity in your home is known to cause sleep problems. "Dirty Electricity is technically know as “High Frequency Voltage Transients” or HFVT. It is the very sudden, rapid, erratic and violent change in voltage that happens thousands of times per second instead of the normal 60 cycle electricity we are used to here in the USA. Dirty Electricity is caused by the opening and closing of electrical switches which causes a spark. The spark causes a burst of radio frequency radiation (RFR) through the air and a conducted emission onto all attached wiring circuits. Wiring circuits are in all your walls and they surround you like an antenna cage. This means you are being irradiated from all sides if your home has Dirty Electricity."We had problems sleeping in our flat after a 5G antenna appeared 300 m. from our living room window over a year ago. We were already shutting wifi and phones off at night and eventually started shutting the power off in the bedroom at night. It helped. We also pulled our bed away from the wall and that helped too. (We moved out of the area we were living into the country and that helped too, though not everyone can do that.)
Hi all, just wanted to give you all an update.After a very bad weekend of feeling absolutely drained off all my energy in now starting to feel more human again with the help of the vitamin D and B12 supplements.
I think we're heading in the right direction again.
I'm still waiting to hear from my endo to ask to get t3 added to my Levo.
However I'm not too happy to drop my levo to 100 mcg as one of GPs called me to say my T4 was too high and I told her I'm not dropping it until I get t3 added, it's
Not worth risking going too low on my medication. She was happy to hear I had started on my vitamin supplements though.
Again, thanks for all your support in this and I'll keep you updated on any news I might have.
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