Hi, I had a total thyroidectomy in September ‘23 due to compressive goitre. I started on 125mg levothyroxine and had no problems.
A blood test at my local hospital in August ‘24 at a pre op appointment for gallbladder removal showed a tsh of 0.22 . My GP advised me to drop the levothyroxine to 100mg .
They advised a retest in 2-3 months, I had to chase this. I had the test last week and have just seen the results online. My TSH is 11, it states I am due for a routine telephone call from a GP.
The test was at 4pm in the afternoon, I know it should be in the morning but it is so hard to get a blood test appointment let alone a specific time!
This seems like a big difference in a few months from 0.22 to 11. I would appreciate your valued advice before I speak to the doctor.
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Olivegarden
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Have you changed how you take your Levo or drinking, eating, taking another tablet/supplement close to your levo? Your results look like absorption issues.
Never adjust dose based on TSH alone. Always insist on FT4 & FT3 results to be taken into consideration, getting a blood test run privately if necessary.
Your TSH is high enough as it is, if you had tested earlier in the day it would be higher still.
What supplements are you taking and what are latest vitamin results?
My dose was changed as the hospital told my GP they were not happy with the 0.22 tsh result. (this is not the same hospital/trust as thyroid removal).
I have not changed the time or how I take my tablets at all.
I am not taking any supplements. Vitamin results also from last week
Vitamin B12 409 (189- 883)
Folate 6.7 (3.1- 20.0)
They didn’t test for vitamin D
I am also waiting to hear about possibly having an ERCP as they think there is a stone still in my common bile duct … don’t know if this is of any relevance?
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).
ALWAYS test early morning and last dose levothyroxine 24 hours before test
Always get Ft4 and Ft3 results before considering any dose change
And reducing by 1/5th was ridiculously large
If Ft4 and/or Ft3 were over range, a reduction of 25mcg per week (as 2 days at 112.5mcg and 5 days at 125mcg) would have been more suitable type reduction
Thanks SlowDragon. I’m feeling lost and confused about all of this.
No other medication or supplements taken. I strictly stick to the same brand (mercury pharma) .
It doesn’t help that my thyroid was removed in an out of area health authority, so my GP and local hospital do not have direct access to those records.
My GP advised the reduction in dose because hospital required it pre gallbladder op, so I didn’t really ask too many questions.
I find the dosing and being hypothyroid without a thyroid confusing. I am right in thinking I will need to increase the dose again?
I’ve been working so hard on my diet and well-being after quite a few ops these last few years and I’d managed to significantly reduce my cholesterol, even this has gone back up on latest blood test.
I find the dosing and being hypothyroid without a thyroid confusing. I am right in thinking I will need to increase the dose again?
Yes
Hospital was incorrect to say you needed to reduce dose levothyroxine without getting FULL thyroid and vitamin testing. Sadly this is not a rare situation
Far too many medics are TSH obsessed.
On correct dose levothyroxine, to maintain GOOD Ft4/Ft3 many, many thyroid patients have low, below range TSH
TSH should be under 2 as an absolute maximum when on levothyroxine
Many (most?) patients on levothyroxine will need to supplement vitamin D, separate magnesium and separate Vitamin B complex continuously to maintain GOOD levels
Some will initially also need separate B12
And a lot struggle to maintain good Ferritin level
Being on too low a dose of levothyroxine will frequently result in low vitamin levels
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:
SlowDragon, thank you so much for such a comprehensive reply, it is very much appreciated. I am going to arrange some private tests.
I’ve just phoned my GP and there’s no appointment to discuss this with me until 23rd January. I presume I continue on my current dose, or will my TSH rise further?
Hi, when you had your thyroidectomy were you also prescribed Calcitriol and Calcium Carbonate to maintain your levels & after a period of time did your parathyroid glands kick back in allowing the Calcitriol & Calcium supplements to be withdrawn. Is your PTH level all OK now? Only that lack of Active Vit D can impact absorption which someone else mentioned which may be impacting Levo absorption.
Hi Den_And, I was prescribed calcium tablets only to be taken if needed ie. If I had any symptoms of low calcium. I was in hospital for a few days and they monitored my calcium. I was part of a trial which involved monitoring the parathyroids.
Maybe worth getting PTH level to confirm whether they have recovered sufficiently as if not working properly can impact absorption (especially calcium levels) but maybe other absorption as well.
I have just received the results of my private ‘monitor my health’ blood test. (Where no range is shown is because no range was given.) Test was taken at 9.30am.
I would very much appreciate your input, thank you.
No, I haven’t increased yet as I wanted to have the test on same dose and then talk to GP.
I’m not currently taking any vitamins or supplements. This is the first time they have been tested in a while. Again, I will discuss with GP. Having no range for these test results and only normal doesn’t really help though.
Vitamin D I will get the spray as I know this aid’s absorption.
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Blood test results
Blood test results
Blood test results
need advice with blood test results please!
