New here and have been looking over posts to give myself some comfort over the below.
4 weeks post thyroidectomy. Went back to working from home as normal last week and got to Wed/ Thurs was completely knackered. The horrible kind I had post surgery where couldn’t think and generally my body was so tired I was in tears.
This week only on Tues and feeling much the same. Very up and down but don’t seem to be back at pre-thyroid removal levels. Starting to worry how long I will feel like this and really just understand better what to expect.
It would be useful to hear some experiences of how you felt from your Op through the first 8 weeks of recovery.
My removal was due to large goiter, all thyroid levels working normally. So I expect there is a transition for me getting used to a drop in my own thyroid hormone and transitioning to Levothyroxine. I’m on 125mcg just now with my follow up early Sept 8 weeks post Op.
Should I expect to feel this way for the full 8 weeks?
Thanks!
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Thyroidnewbie84
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I had a total thyroidectomy in late 2017 (Graves disease). Was on 100mg levothyroxine for 1 year, could not tolerate as heart problems started due to it. Since late 2018 I am on NDT (natural desiccated thyroid). My life is back and no heart problems as before on levothyroxine.
When I was on levothyroxine 100mg my tsh and FT4 were always at the top range, sometimes my Ft4 was over the top range. I never felt well on levothyroxine but in October 2018 I felt very bad with high blood pressure, pulse, palpitations, I couldn't walk for a long time, I felt terrible. At that time my TSH was 3.44 (0.3-4.20 normal) and Ft4 was 22.9 (12-22 normal). My gp sent me for ECG which came abnormal, although 1 year ago before my thyroidectomy my ECG was completely normal. My GP decided to reduce levothyroxine from 100 to 75mg. After that my TSH rose to 12(0.3-4.20 normal) and Ft4 was 18.4 (12-22 normal). Despite this I did not feel better. I asked my GP for t3 trial but she said she can't give it to me and only levothyroxine is available in UK. So I had no choice but to order NDT.
NataliAAA, that is rubbish! If your Doctor seriously believes that, you need to get another one as she knows nothing about the thyroid. T3 (Liothyronine) is available in the U.K., maybe she is trying to keep you from requesting it as it is so expensive.You need to request a referral to an Endochrinologist, they are the only ones who can prescribe it. I have been on it for 20 years.Most people who have their thyroids removed will not do well on thyroxine alone, as 20% of T3 comes directly from the thyroid. People should not have to order and pay for T3 or NDT.
Do you have thyroid and vitamin results from BEFORE thyroidectomy
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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
Ask GP to test vitamin levels NOW..if not been done before operation
Levothyroxine needs GOOD vitamin levels. That frequently means supplementing necessary to maintain optimal vitamin levels
Thyroid levels should be tested 6-8 weeks after each dose change (or brand change) of levothyroxine
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)
Be kind to yourself, you have had major surgery. When I had TT for goitre in 2002, my GP signed me off for 3 months. I am fortunate that I have been ok on levothyroxine - 100mcg for many years, currently average 80 to 85 mcg. Only issue was sticking to the same brand. I always get Actavis/Accord as discovered the acacia powder excipient in others didn't suit me. Wishing you a good recovery.
I should have added to be sure to get your calcium levels checked. My parathyroid glands suffered in the thyroidectomy and I have been on Adcal-D3 ever since.
I had TT in 2016 (cancer) and honestly I never felt great. I have days when my muscles feel like jelly and I get out of breath quick doing pretty much nothing and I have super lazy days were (if I could sleep 24 hours I would) and other days I get up without any problems and everything is great!
I suffered the most AFTER my thyroidectomy with mood swings from crying to rage and I developed psoriatic arthritis and I gained most of my weight in the first year and half after my surgery.
Im on T4 and T3 .... I believe T3 meds is important to US without a thyroid, we make no natural hormones anymore!
if it were only 8 weeks! Sorry to have to tell you this, but most people take a long time to get back to anywhere near normal.
It's a major change for your body, as the thyroid is involved with so many processes.
They say after the op you will just take thyroxine, and be back to normal, but it's not like it.
You need to take time to recover and be kind to yourself,not do too much and not expect to get back to how you were before the op.
I was prescribed 100 mcg after the op, but was the same as you, very tired, couldn't think straight, a job to do anything. They increased it to 125mcg, but then said the blood test was too high and I had to reduce it again. I couldn't function on 100 mcg, thyroxine so I got referred to an Endochrinologist, who prescribed 75mcg thyroxine and 20mcg Liothyronine (T3), which gradually improved things.
Most people without a thyroid will need T3 and not manage on thyroxine alone.The problem is it is so expensive now, and only Endos can prescribe it, so if you are not getting any better you need to request an appointment with one.
Thanks everyone, lots of info help me as I move forward over the next few months. Definitely seems it’s a marathon and not a sprint to recovery.
I’m lucky that my care is all via private healthcare provided by my work so Surgeon/ Endo is open to prescribing whatever I need. He’s already spoken about the different options available if I’m unlucky on just Levothyroxine.
Really interesting to get your findings that no thyroid tends to needing T3. I wasn’t aware of this.
I don’t have any detailed tests prior to thyroid removal only TSH. As this was normal nothing further was tested.
I’ll definitely be pushing for a full suite of tests at my first Post Op appt.
Vitamins are also something I’ve taken on board as important following some reading. Currently taking, Vit D, C & Zinc, B complex & magnesium, Supergreens.
I’ve also cut soya out my diet and take Levothyroxine in the morning and all vitamin and contraception in the evening.
Hoping this all helps with absorption.
Any other tips or useful info to ask for in follow up appt would be helpful!
I removed my thyroid over a year ago and I felt terrible first 6 months as I was placed on lower dose than I obviously needed. I suggest you go and check your levels right away even if doctor tells you it’s early, just to make sure that your levels are not too bad. My doctor in England told me when my TSH was 11 that it’s ok and I should wait for 6 weeks and two weeks later I ended up in ER with TSH 30 and inability to breathe. I was placed on 150 instead of 100 and in two days went from 30 to 14. So go see your doctor please whenever you dont feel right and don’t take no as an answer. Good luck!
As a newbie . I can totally relate to this thread concerned on how long recovery is after reading this as my employment is a sport coach. I havent been really told what to expect post op and returning to work
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