Having had a total thyroidectomy 6 years ago (multiple benign goitres), I have been trying to find the best Levo dose to minimise the effects of permanent hypothyroidism. The hospital discharge daily dose was 150 judged by my weight at that time. However, the side effects after the first few weeks were overwhelming so the dose was lowered to 75 which seemed to be ok for a couple of years. The hypo symptoms became worse again so the dosage was increased in increments to 150. After 6 months the symptoms became intolerable because of the extreme hyper side effects. So the dosage has been reducing gradually since last autumn in increments down to 100 at the moment, with another dose reduction expected to 75 after the blood test.
My previous 3 routine tests results have shown similar pattern ranges. T4 free – high: T3free – low: T3 reverse- high. My new GP is convinced that I am still hyper based on blood tests only.
The last test result taken in March -
T4 free 18.3pg/mL (9.3-17.0)
T3free 2.7ng/L (2.0-4.4).
T3 reverse 0.34 μg/L (0.09-0.35)
I am feeling really unstable. The symptoms seem to be rotating every 2 or 3 days with a cluster of typical symptoms that change from hyper and then to hypo symptoms and then visa versa. Sometimes it appears gradually and sometimes within ½ an hour. How is this possible? Is this still a transition period?
Also, whilst on the 150 dose my weight was constant at 63 kg but since the start of the decreased dose at the end of last year I am gaining weight again - I am now 70 kg and my clothes are getting tighter. Also, although I had a mild form of Hirsutism since I was in my late 20s - following the recent decrease in levo the problem is becoming unacceptable. And over the last couple of days, gritty eyes have been a constant problem.
If anyone can shed a light on what might be going on? I would appreciate your thoughts and perhaps recommend a way forward to discuss with my GP.
Many thanks
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White_Mist
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The problem is, you're not converting your T4 (levo) to T3, the active hormone. Your FT4 is right at the top of its range, and your FT3 is right at the bottom. They should be more or less equal. Your rT3 is high-ish - although not over-range - because your FT4 is so high.
There can be many reasons for poor conversion, but one of them is nutritional deficiencies. Have you had your vit D, vit B12, folate and ferritin tested?
The problem with symptoms is that so many of them can be either due to over-medication or under-medication (you can't be hyper with no gland). So, it can be difficult to judge. But, with such a low FT3 they have to be due to under-medication. Continually raising and reducing your dose of levo is not going to help. What you need is a little T3 added to a reduced dose of levo.
Thank you for your reply Grey Goose and for your explanations – much appreciated.
I agree that raising and reducing is useless, is seems like going over the same ground again. We have recently changed our GP who seems to be more willing to listen so hopefully we will be able to have a two-way discussion with him to explain what I would like to do with respect to your suggestion about the T3.
Nutritional Deficiencies. I have had blood tests this morning and when I receive the results, I will post them with the historical results including the ones that you mentioned above.
I have recently had a comprehensive Bilan Sante in June and is it possible to post it as a PDF on this site if you think the information would be useful?
Did the Bilan Santé include thyroid tests or nutrient tests? If not, not much use at this point. But, I don't think you can post a PDF, anyway. Although I've never tried. People will ask you if they need any additional test results, but normally, it's just the thyroid and nutrient tests we're interested in.
Reformulation on French Levothyroxine. Yes, for me it does have is faults but also has advantages too.
I gradually developed Acid Reflux 3 years after the thyroidectomy - a really, really horrible condition. I found it difficult to control despite all the medications and diets that I tried. All the advice given by the consultant and information on the internet just did not work. I tried everything.
At the beginning of 2018 the levo dose was increased to 150. At first, I felt the best since the thyroidectomy because so many of the hypo symptoms just faded away and I was able feel almost normal. I was able to wean myself off the Acid Reflux during the summer. Although I have to be vigilant day to day about what and when I eat, I no longer have to take acid reflux medication.
However, within 5 months the increased dose resulted in over- mediation and different horrible symptoms – hence the levo reductions.
For me, the new Levo made a difference to the acid reflux condition, but the old and new Levo has made no difference to the other levo side effect.
Ferritin. I had a Ferritin test done recently 100 μg/L (15-150). What do you think?
I am expecting the results of a range of blood tests on tomorrow including Iron.
In the meantime, I will read all of the articles that you have given me the links for.
Come back with new post once you get other results
Vitamin D, folate and B12 all need to be optimal
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).
Just as a point of reference a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3.
T4 is a prohormone and your body has to turn this into T3 which is what the body runs on.
Conversion can be compromised if vitamins and minerals are not optimal in their ranges.
However I simply think if there has been a medical intervention and the thyroid surgically removed or ablated with RAI both these vital hormones should be on the patients prescription for, if and maybe when, required.
Some people can get by on T4 alone, some people for some reason simply stop converting the T4 to T3 and some people simple need both these essential hormones dosed and monitored independently, to bring them into balance and to a level of well being acceptable to the patient, which generally finds both T3 and T4 in the upper quadrants of the relevant ranges.
The thyroid is a major gland responsible for full body synchronisation including your emotional, physical, mental, psychological and spiritual well being, and the thyroid controls your metabolism and central heating system.
I am with Graves disease having my thyroid ablated in 2005. I became very unwell some five years ago, and thanks to this amazing site I am now getting my life back.
I was refused a trial of T3 last year on the NHS and I have since gone on to self medicate, purchasing both T3 and Natural Desiccated Thyroid and have trialled both options. I have selected NDT as my chosen thyroid hormone replacement and am now just over six months into this treatment option and continue to improve and build back up my health and stamina.
It's a massive learning curve and there is so much to read and understand. There is a book that has helped me, written by a doctor who has himself hypothyroidism. It's called Your Thyroid and How to Keep it Healthy by Dr Barry Durrant - Peatfield - it's an easy, sometimes funny read, insightful and relevant in so many ways, and we really do need to know about all things thyroid, so we can attempt to compensate for our loss of this all important gland.
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