Hello you wonderful people, please can you help and advise.
Since I last posted I have been diagnosed with Papillary Thyroid cancer, I had surgery on 2nd January which went well at that point.
I finally had my endo appointment on 20th January after being on the waiting list for 14 months!
Previous responses to my last posts indicated I was a poor converter and a little T3 might help.
I tried to get this across to the endo but as you can see from the letter I was dismissed outright.
The endo said had I seen them around 2020/21 they would have stopped my T4 as my tsh was not high enough and treatment was not resolving my symptoms.
I had my post op appointment on the 28th January and the outcome is I have to have a Total Thyroidectomy on 5th March, this is due to the cancer being found in the blood vessel of the left lobe removed, I will then have RAI treatment.
I told my surgeon about my endo appointment and briefly what they had said, he was not happy and said going forward they will sort out my medication post surgery. I will also advise my GP of this tomorrow.
I have a face to face appointment with my GP tomorrow to discuss endo letter, please could you offer any advice or is it best to discuss with my surgeon post Total Thyroidectomy.
For info
My surgery is at the Northern General hospital, Sheffield.
My RAI will be at Weston Park cancer centre, Sheffield
I am also part of the HoT trial (Hemithyroidectomy or Total Thyroidectomy) research group to understand which option is best undertaken when patient presents with or indeterminate Thyroid Cancer.
Thank you so much for taking the time to read this x
Page 2 of the letter below.
Written by
YorkshireLass_1964
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If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
Graph showing median TSH in healthy population is 1-1.5
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Levothyroxine is 100 mcg Eltroxin & 25 mcg Mercury Pharma daily.
I reduced down to 100 mcg as my T4 was over range, when I had my post op appointment my surgeon said to increase back up to 125 mcg, this will need to be increased again post my 2nd op in March.
I test all the above via Medichecks following the blood draw protocol.
I take the following
2 x magnesium citrate/ malate
1 x selenium
1 x vit d3 & K2
1 x b complex
Endo also said if T3 was prescribed it would suppress my TSH and that would cause heart and bone issues!
Propranolol dose is 80 mg slow release, after advise to reduce due to interaction with Levo, I discussed this with my GP, he was hesitant to do this and advised to hold off until I'd had my endo appointment.
I discussed with the endo about reducing or an alternative to propranolol, the response was, I don't get involved with that your Dr must make a referral to Nuero 🤷♀️ it's on my list to dicuss with him at my appointment tomorrow.
Now gluten free, will try dairy free after my surgery.
Yes I take x2 Pure Encapsulations Magnesium (citrate/malate) after my evening meal along with a Vit D3 & K2 tablet.
Endo didn't discuss anything with me, the opening introduction was, I know nothing about thyroid cancer and will have to refer to the latest NICE guidelines.
I also said private tests confirmed Hashimoto's, she said I was fixated with the numbers, and that as the TSH was in range and the most stable reading I was not a candidate for T3, not even a trial when I requested it to see if it would help.
I pointed out propranolol lowers conversation, again wasn't interested and said my GP should refer me to numerous regarding my migraines.
I started having trouble with my thyroid aged 68 back in2014 in the UK. Nothing was done about it and the lump had stopped me breathing properly. Anyway I moved to France in March 2015 and in less than six months I had a thyroidectomy. They don't do halves here at all.
The same cancer as yourself. Anyway I was sent home with a letter from the professor surgeon who did my op stating that I was to receive T3 with my Levo. I now take Thyroid s NDT.
You could always buy your own T3 online it's easy. Good Luck.
What about acupressure for your headaches I taught myself and it works wonders.
Also Beta Blocker do block I have no thyroid and was given Bisoprolol for a high heart rate
and they blocked my conversion even at the smallest dose. There are many papers written about the good effects of Beta Blocker on Hyper Patients. Not Hypo.
I spoke to my GP and after my surgery is completed we have a plan in place to ween myself off BB.
Unfortunately I get no warning a migraine is starting as they wake me up in the middle of the night. Once this happens that's me out of it for 24 hrs until it clears, thanks for the info that was very kind of you. 😊
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