Hi everyone, It’s now been over 2 years since I had a total thyroidectomy due to a substernal goitre, and I’m still getting abnormal blood results (low TSH, high T4 and T3). My dose of Levothyroxine has been reduced a number of times by my GP.
A couple of months ago I was referred to an endocrinologist who made further reductions to my dose of Levo, I’m now taking 75mcg 4 days and 100mcg 3 days a week. He also prescribed a daily dose of Vit D.
Since taking Levothyroxine I’ve had problems with palpitations but they seem to have subsided as my dose has been reduced.
However, I’ve just had my latest blood results and I’m really concerned that my T3 is now too low. I would really appreciate any advice. My results are:
TSH: 0.07 (0.30-4.50)
T4: 19.4 (10.0-22.0)
T3: 3.9 (3.1-6.8)
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Janet02
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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 under medicated or having poor conversion
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
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
Research shows 20% Patients with no thyroid function, can not regain full health on just Levothyroxine
Thank you for your quick reply. I definitely feel better on a higher dose but that does come with the problems of palpitations. My health in general has definitely declined since I had my TT. In addition to my thyroid problems my blood sugars have increased and I’m now pre diabetic.
I had my bloods taken early in the morning and there was a gap of twenty four hours from my last dose of Levo, however I wasn’t aware that I should fast so that’s good to know for future tests. I think the next step for me is to get some private tests done to see what’s happening with my vitamin levels.
You’ve certainly provided me with some very helpful information and I’m very grateful for that.
With regard to palpitations; in my case I developed a very rapid irregular pulse which improved a lot when I reduced my dose of NDT, however it came back from time to time. Someone on this forum recommended magnesium and this seems to have helped normalise things. It's anecdotal though.
Sending you Strength and Sympathy . You are dosing now with 85.7 mcg T4 with 75mcg 4x + 100mcg 3x . That sounds a bit low for someone that had TT . With your Dr lowering your T4 so will your T3 fall too and your TSH will rise too somewhat . Adding some T3 will help raise your FT3 plus help with your palpitations . I too had TT and was dosed with high T4 doses for suppression purposes . I had palpitations aches/pain , anxiety, weight issues, headaches , high blood pressure , fatigue, insomnia , not motivated , feeling cold etc.
Once my T4 was lowered and some NDT was added for my T3 mix it was a Great game changer for me .
Adding nutrients are Very Important for us it helps our thyroid meds work better for us . Vitamin "D" /K2 , B-Complex , B-12/folate , Iron if you test low , Vitamin "C", magnesium , Celtic Sea Salt for adrenal/electrolytes .
I managed to reverse mine completely by getting my vits etc optimal so I did that first though it took some time as a couple very pretty low but I was also wanting to go back to taking NDT so was glad I was working in that direction as the small amount of T3 in the NDT would help me as well. Best to get your results optimal first though as you can't check conversion once taking T3 in any form.
Just for reference a fully functioning , working thyroid would be supporting you daily with approximately 100T4 + 10T3.
I just think that if there has been a medical intervention and the thyroid removed or ablated with RAI both these vital hormones should be on the patients prescription, for if and when required.
Some people can get by on T4 alone, some people simply stop converting T4 to T3 at some point in time, and some people simple need both these essential hormones dosed and monitored independently to bring them into balance to give the patient an acceptable level of wellness which generally means both T3 and T4 being in the upper quadrants of their relevant ranges.
The body runs on T3 and loosing this initial dose of 10 T3 through not having your own thyroid roughly equates to 20% of your daily requirement of the T3 hormone.
T4 is a storage hormone and must be converted to T3 within the body, and it is essential that you are monitored on T3 and T4 blood test results, and not just a TSH reading.
Conversion can be compromised if your ferritin, folate, B12 and vitamin D are not optimal.
There is a book that I found and still do most useful - Your Thyroid and How To Keep It Healthy by Dr Barry Durrant - Peatfield. He himself is hypothyroid and his book is written in an easy to understand, sometimes funny, insightful way.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual wellbeing. The thyroid is the conductor of the body's main orchestra and if not working well, either hypo, or hyper, and not medicated optimally, your body will try and compensate for some considerable time, but ultimately you will start suffering systems that you may not even consider, in the short term, related.
It's a massive learning curve, and there is much to understand but I hope the above brief explanation helps you. I am with Graves Disease and had my thyroid ablated in 2005. and am now self medicating.
I too had a TT three years ago, after a thyroid storm (very frightening)......I have not felt well since...my levels are all over the place. My TSH is generally on the low side, which is ok...but my T4 always seems to be very high, it has been up as high as 30 (12-22). My T3 is always on the low side around 3.2 and 3.8 (3.1-6.8)....I now take 75mcg Levothyroxine 4 days a week & 50mcg 3days a week....and feel awful some days...tired, lethargic sleeping all the time, tearful and generally not coping with things, this is very unlike me.... I also take Selenium 200mcg a day (a suggestion from the very lovely people on this sight, supposed to help with conversion!, dread to think what my T3 would be if I didn’t take it!) and Vit D in the winter.....my Ferritin, folate, B12 levels are ok. I think GPs seem to think if the results are all in range even at the lowest end, everything is ok.....that is not the case....levels, I believe should be at least in the middle of the range to feel at all human again!
I believe I have a conversion problem and have requested a referral to the Endocrinologist, ( who I have seen once since discharge ). I just need some answers. I think I need some T3 and will suggest a trial of T3 even if I have to fund it myself for 3 months.....if that is the answer, hopefully he will prescribe on NHS for me (I am not holding my breath though)....no-one told me it would be this difficult or that I would feel so low after my TT, they just said I needed it removed, and I am at an age when I, usually, listen to Doctors!
You are very right when you say you need some T3 . Especially for those of us that had TT . Now that our thyroids don't make any T3 T4 we must manually add it . I'm not from the good converters either and adding NDT for my T3 mix with my T4 made a *Huge* difference for me .
Your story is so similar to mine. I too believe I have a conversion problem, and I too was seen once by an endocrinologist and discharged. I even have the same symptoms.
When I think back to my operation, I was discharged the following day with some Levothyroxine, the contact details for Thyroid UK, and an appointment to go back in three months for a blood test, that was the total of the support I received.
I had a real wobble yesterday when I saw my latest results, my T3 continues to get lower with each test. Each time I have blood tests taken my results come back abnormal, and each time I’m told by my doctor to reduce my dose of Levothyroxine.
Today, after receiving everyone’s replies and support, I’m feeling more positive. There seems to be so many of us in a similar position. I’ve just ordered my private blood test and I’ll start talking Selenium as you suggested. If there is no improvement I intend to take the same route as you and have a discussion with my GP about T3.
I wish you well and hope that eventualy we all get our normal life back. Good luck
I would ask for a referral to the Endo as I don’t think GPs can prescribe T3 now. Hopefully I will get a good Endo! It will be great to feel like a human being once again.
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