Feel like shit. Can't sleep crying irritated. bloods all over the place. Really find it hard some days. I have little patience. erratic if you know what I mean. My TSH came bk as 14 now 10 even with meds upped. So fed today. My body just feels all over the place.
Just want to get back to been me
Most of us here may still have some production of thyroid hormones, i.e. T4, T3, T2, T1 and calcitonin and add T4 or T3 or NDT to supplement it but you have NO thyroid to produce any hormone and what was in your system is gone. There are some here who have had thyroid cancer and can tell you more but I think you need to keep your TSH totally suppressed and you still need to have optimal levels of FT4 and FT3. That means in the upper part of the range. Why have they allowed your levels to get that high? I would think they began treatment shortly after your surgery. Here is a list of articles from STTM.
Hi Kazbar-70. I agree with Heloise . You still need to have optimal levels of FT3 and FT4. What are your plans for increasing your medication to reach optimal? Depending upon your current levels, you might need to take both T3 and T4, if you aren't already. Do you also have autoimmune thyroid disease? Your antibodies might still be high, which would make you ill, too.
Hugs and kindly offering my support to you.
Essential to test vitamin D, folate, ferritin and B12 too
Many of us need to supplement to maintain levels.
Lots of people after RAI still find going strictly gluten free helps
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test FT3 and FT4, plus vitamins
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3
thyroiduk.org.uk/tuk/testin...
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting.
If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Suggest you also request the list of recommended thyroid specialists, some are T3 friendly
Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI
It could be your thyroid is over and underactive. Im like you up and down all the time. Had my thyroid graves disease for over 25years now. with hashmitos. And when your over and under your body is messed up either produce's to much or none. Need to keep on at your dr's. Every time I'm at the hospital I keep on at them to help me think I'm finally getting threw to them.
Graves Disease is an autoimmune condition and as such - it is for life ! Yes !! Who knew ?
Removing the thyroid by surgery or radioactive iodine thyroid ablation ( as in my case ) -does not remove the Graves antibodies within your blood system. All that has happened is that the " life threatening " side of this Disease has been removed by killing off / removing your thyroid. The thyroid is the victim not the cause. The cause is an autoimmune condition and that now needs to be managed and does the resultant hypothyroidism caused by being thyroidless.
You need to start educating yourself and this is an excellent site to work through - I know this will be difficult, your hormones may be " all over the place " making everything a challenge and reading and retention almost impossible ( my experience ) .
It would be wise to strengthen your knowledge as it seems to be an area of medicine, much maligned and badly understood even by many who purport to be specialists.
Be kind to yourself, there is help here, it can seem like too much information, but baby steps generally lead to stumbling and then standing without holding on - and we are all somewhere in this process.
Keep your chin up. It normally takes quite a while to get the medication sorted to a level that is right for us. Each of us is different and the right medication for us is not simple or obvious but has to be worked out slowly. Every change in medication takes 2-3 weeks to settle down before we really know if it has helped or not (blood tests are often 6 weeks apart for that reason). We have to go one small step at a time, so it all takes quite a while. Eventually we get there but the process can be frustrating and takes a lot out of us. My advice is to keep notes every day of your medication level and how it made you feel (I do it on my phone). Note any illness or cold or significant stress or activity as it knocks you back and is not just the medication. You and your family/close friends need to be aware that it will take time and will all need a lot of patience. You especially will need it as it is very frustrating. You need to plan your days at a realistic level of what you can do. Always trying to do more than you can will be disheartening. Being realistic will mean you can achieve what you plan and feel better about yourself. These things are important because lack of thyroid hormones has a chemically depressive effect and you need to keep positive to overcome the natural discouragement. I hope this is helpful; I wish I could say it was all quick and easy. It can be for some as they respond well to Thyroxine (T4) and it is simply increasing the dose slowly until you feel well. I really hope that's the case for you. Keep your chin up and use the support available of thus forum. There are some great people on here and many that give up a lot of their time to help. They have a lot of experience.
Hi Kazbar,
I can sympathise with you as I had my Thyroid removed 18 years ago.In my case it was a long hard slog to get anywhere near feeling "normal". My head was all over the place, I couldn't think straight or remember things.,and was so tired all the time.So don't think you are alone!
As you have no thyroid now you will almost certainly need T3 as well as thyroxine.Of course they will try to keep you on just thyroxine at the beginning,you will have to have blood tests quite frequently (usually every 6 weeks).Your TSH will gradually come down,mine is now 0.01 and stays there.After a time if you are still not feeling well on the thyroxine alone, you need to be firm and insist on seeing an Endochrinologist,who are the only ones who can prescribe T3.
Your Doctor will probably say "we don't prescribe that anymore", but if it is proved that you need it then it still can be prescribed, I am still being prescribed it. The thyroid gland normally produces about 20% of the T3 your body needs, and if you don't have one then this is not possible ,and you need to be given T3.
I hope you feel better soon.
It's been some months but dealing better with no thyroid now. levels are good at the moment. On 175mcg Levethroxine. Im now suffering with sleep apneo. Thank you for all your comments x
Didn't have RAI treatment
Post Thyroidectomy Op Advice Please
8 weeks after diagnosis
Bloods after approx. 8 weeks of T3
Hypothyroidism taking T3 only for 8 + years - blood test results 
