I messaged a while ago about my experiences after a partial thyroidectomy for a thyroid cyst and I’d really appreciate some advice and opinions again.
My surgery was almost two years ago, in July 2022, and I didn’t get much support afterwards. I had one blood test, was told it was normal and that was it. I had to have more blood tests as I was so exhausted all the time and even when my results highly suggested hypothyroidism, I had to ask my doctor to trial me on Levothyroxine. He only gave me a small dose of 25 micrograms a day, but it seemed to help. I didn’t feel completely well but the tiredness and depression definitely felt less intense.
In December 2023, I went to a follow up at the hospital with a registrar (it was a year later than it was meant to be but that’s the NHS I suppose) and he said that I didn’t need to be taking the Levo as the dose is so small that it wouldn’t be making a difference. I told him I felt better with it, but he said it was likely a placebo effect. I stopped taking them as per his advice and now 6 months later, I’m more exhausted than ever.
I had bloods done recently, by my request, but no tests for vitamins or iron deficiency or anything like that , only TSH and T4. I’ve got the results and the difference between a blood test I had back in November 2023 compared to the one I had last month. I’ll post it here for you to see. Everything comes under normal so the doctor just wrote a note saying within normal range and that was that.
I’m pretty clueless regarding my test results to be honest. I only know what things mean from Google searches and we all know how limiting that can be. My family and friends wanted me to take my levothyroxine again as they are all noticing a big difference, so I’m on one a day at the moment.
As well as being tired 24/7, I’ve also got constantly itchy skin that I have to take medication for, depression, brain fog, aches and pains in my legs and feet (which I’ve always had but seem to be worse now) and bad intolerance to heat or any kind of warmth. I have the fan on constantly, which is okay at this time of year, but I had it on all through winter and I feel terrible for my partner because of it. I also sweat a lot more and my weight is a nightmare to maintain, which makes the sweating and heat intolerance ten times worse. I’m embarrassed to go outside because of it and I’m dreading the summer as I know I’m going to just lock myself away (I work from home anyway) so I don’t have to face anyone while looking so red, sweaty and having put on so much weight.
Life is getting less bearable by the day because of all this, so if anyone has any advice, it would be so appreciated!
Thanks everyone and wishing you all the best and good health
Nia xxx
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NiaJayne
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your results suggest you likely need levothyroxine
What time of day were tests
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
My family and friends wanted me to take my levothyroxine again as they are all noticing a big difference, so I’m on one a day at the moment.
So you are back on 25mcg daily?
Which brand
Retest 6-8 weeks after EACH dose increase
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
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 near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
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).
From what you've described in your post taking levothyroxine did appear to help you with tiredness. I know from my own experience I was prescribed levothyroxine for tiredness after a partial thyroidectomy.
I was started on 25mcg as I'd been hypothyroid for many years prior to my op Unfortunately I couldn't tolerate that amount to start with so broke it down into tiny 5mcg pieces. Even with those small amounts of levo I could feel the difference.
I would continue to take the 25mcg and titrate upwards as SlowDragon suggests.
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