Sorry it's taken me so long. Been so busy and then didn't have spare energy to post. Last time I posted, I was fighting to get FT4 and FT3 tested on the NHS. After much fighting they agreed (didn't do T3 tho which is super annoying). In the mean time I was on Levo 25ug that one of the GP withdrew from me.
TSH 1.05 mu/L (range 0.35-4.94)
Thyroid Peroxidase 0.2 iu/ml (0-5.9)
FT4 11.6 pmol/L (9-19). This is a modest improvement on pre levo where I was around 10. From what I know, this is still WELL below optimal esp for someone with ME/CFS where it should be in the upper half.
In the mean time, after all my fighting, another GP not only reinstated my levo but offered me 50ug without me even asking. I was astonished and pleased. I put that on a retainer as I have said before, I removed my breast implants in sept and I know implants cause a huge range of M.E like symptoms incl underactive thyroid. I wanted to wait and see what happens with my health after explant and whether I will need a higher dose or indeed any at all. It's been two months exactly and I've had some very minor improvements to my health and some better days than I've had in a very long time. I know it can take me months or years to detox all the toxic chemicals ad heavy metals and for my thyroid and body to really feel better. For this reason I haven't taken the higher levo yet but I'm thinking if my improvements are super slow, I may just go for the 50 because I'm so exhausted of feeling exhausted. What would happen if I took it? Would I be able to stop if I get better or will that commit me for life?
Also had my B12, MMA, folate and homocysteine checked and they are all excellent. I'm not deficient in anything. I am doing a full on detox as we speak.
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Lenaa
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What would happen if I took it? Would I be able to stop if I get better or will that commit me for life?
No, it would not commit you for life. If you stopped completely, the thyroid would just go back to doing what it was doing before you started taking it. No better, no worse. I'd take the increase now, if I were you. What's the point of suffering needlessly?
I thought taking meds suppresses/replaces what you're naturally making rather than adds to it. I guess I want to be sure the suppression will be lifted if meds are stopped.
It suppresses your natural production while you're taking it. But it's not permanent. The thyroid will come back to making what it can if you stop taking the exogenous hormone.
That includes both TPO and TG antibodies, plus FT3 and all four vitamins
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies 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
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. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Yes I did first thing before food. I can’t afford testing at the moment and like I said my active B12 is very high. I am certain my iron is fine. It always has been. I have an exceptional diet and eat liver every week. I had both antibodies tested privately in 2017 and they weren’t raised.
What do you think of my FT4? What do you think will happen if I come off levo in the future?
Yeah I’m not toxic for D3 for sure. Bottom of the range for T4 is not optimal tho is it? Should be a lot higher than that, no? My FT3 historically has always been around 2.7 when the bottom of the range was 2.6 so also very low
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
So even if my TSH is very low, with such low T3 and T4, I should take levo. Why does NHS give T4 range all the way to 9 if clearly having 11 (allegedly within range) is well below what it should be?
Just had my results back from medichecks and am shocked as I had perixidase done by GP and it was completely normal
0.27 - 4.2 R TSH
1.66
mIU/L
FREE T3
3.1 - 6.8 R
4.18
pmol/L
FREE THYROXINE
12 - 22 R
14.6
pmol/L
Autoimmunity
Autoimmunity occurs when your body's immune system mistakes your own cells or tissues as being "foreign" and starts attacking them. There are a number of autoimmune diseases which are defined by which parts of your body are under attack. Common autoimmune conditions include thyroid disease (Hashimoto's Thyroiditis and Graves' Disease), systemic lupus erythematosus (lupus) and rheumatoid arthritis. No one knows what triggers an autoimmune condition but it is well documented that more women than men are affected, and that your risk of developing an autoimmune condition is higher if a family member is affected, or if you have already been diagnosed with another autoimmune condition. Autoimmune disease can cause a wide range of symptoms which can either flare up from time to time with periods of remission, or remain present constantly. The symptoms vary according to the bodily systems affected by the disease. In some cases the tissue affected is very specific, e.g. the thyroid in Hashimoto's thyroiditis, whilst other diseases affect a wide range of body tissues, e.g. lupus.
I’m on 25ug. I haven’t increased yet as I hoped my thyroid will improve by itself post explant but it hasn’t done that yet so it’s time to increase for sure.
This is still better than before levo. My T4 and T3 were right at the bottom of normal range.
Someone just said not to trust medichecks as they aren’t quality assured. Surely they can’t just give false results but this makes no sense at all. How can my TPO be so very different in both tests
Hey, I too have been plastered with the CFS diagnosis but I paid for a T3 and guess where mine was? Also paid for a gene test to see if I convert my T4 (levothyroxcine) to T3 and guess what that said? I do indeed have an under active thyroid due to RAI yet even with this massive clue the Drs still went down the CFS rabbit hole. I remain unconvinced and have started T3 on my own. I know you are skint but get that T3 test and your iron. Your iron might be ok but it may also need improving. And I bet your T3 is low end too. But wish you better health and I’m sorry you’re poorly
I know my T3 is low 100%. It is only just within range right at the bottom but officially it looks like I’m not hypo (even tho I get levo from GP nowadays as I convinced them). Is yours within range?
I literally just started taking T3 so it’s still low. My regular Drs have never tested my T3 and when I asked them to test for it, she went blank, said she would try, but upon receiving results found it wasn’t tested for. I’ll go bad and try to repeat the process but I’m also going it alone. I am on levo due to under active thyroid, but I think the levo doesn’t help me as I’m a poor converter, hence why I am sick.
I have no doubt that my low thyroid is a result of toxic chemicals found in breast implants. They are endocrine disruptors. That’s why I don’t know wether to wait till I get better now that I’ve explanted or just take the higher dose anyway.
Just re-read your post. As you feel rough I would go with the increase. It might help you in the now. And once in a better position financially get a full thyroid test done. See where your levels are then.
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CFS/ME - Anyone with thyroid issues also suffer with?
An interesting study about thyroid, T3, selenium and ME/CFS 
CFS ME diagnostic issues in research, especially pertinent to recent low T3 paper.
Blood test results via Thriva
