I had been hypo for many years and was on 150 mcg of Levo. 18 months ago I was told I was hyperthyroid because my TSH levels were very high. My dose was lowered twice and I am now on 75 mcg Levo.
I have absolutely no hyper symptoms. Completely the opposite. My weight went up by 7-8 lbs each time the dose was lowered and I now weigh 1 stone more than I used to.
Am I right in thinking that hypothyroidism is diagnosed because the TSH level is very high but the T4 is normal?
I am having a Medicheck well women blood test next week. (Thought I may as well get everything else checked as well to arm myself before seeing the doctor). I am wondering if I should not take my Levo till after the test so that it will show my own, unmedicated levels of TSH.
This is where I get confused. If my TSH naturally is high then that means I am hypo and Levo would be prescribed to lower as happened in the beginning.
But I am taking Levo and my TSH is too high. Does this mean that my thyroid has started producing TSH as well pushing up the level?
But if the TSH is low (normal) then I am being over medicated by taking the Levo.
I am afraid that the doctor may reduce or stop my Levo and I know I will gain more weight plus I have all the other symptoms of being hypo not hyper. When I asked the doctor how I could go from years of being hypo to hyper she said she didn't know!
Please advise me whether to take the Levo before the blood test. I will post again when I get my results.
Thank you.
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I had been hypo for many years and was on 150 mcg of Levo. 18 months ago I was told I was hyperthyroid because my TSH levels were very high
Two things to say here. If you are hypOthyroid, it's impossible to become hypERthyroid, you can't go from underactive to overactive, your thyroid can't regenerate and go the other way. However, you can become overmedicated which can give some symptoms similar to hypERthyroid.
Secondly, high TSH is hypOthyroid, low TSH is hypERthyroid.
I have absolutely no hyper symptoms. Completely the opposite. My weight went up by 7-8 lbs each time the dose was lowered and I now weigh 1 stone more than I used to.
I had suppressed TSH and very high FT4 (which would indicate overmedication if you are diagnosed hypOthyroid already) and I didn't have symptoms of hyper either, I still had hypo symptoms.
Am I right in thinking that hypothyroidism is diagnosed because the TSH level is very high but the T4 is normal?
Hypothyroidism is diagnosed when TSH is high and FT4 low.
I am having a Medicheck well women blood test next week. (Thought I may as well get everything else checked as well to arm myself before seeing the doctor). I am wondering if I should not take my Levo till after the test so that it will show my own, unmedicated levels of TSH.
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
It doesn't show your unmedicated level of TSH. In fact, leaving off Levo for 24 hours wont affect your TSH, it affects your FT4. Leaving it off for 24 hours gives the nearest measurement of your normal circulating hormone. What does affect your TSH is timing of test, coffee and eating.
This is where I get confused. If my TSH naturally is high then that means I am hypo and Levo would be prescribed to lower as happened in the beginning.
Correct.
But I am taking Levo and my TSH is too high. Does this mean that my thyroid has started producing TSH as well pushing up the level?
We would need to see your test results, with reference ranges, to comment. Tests needed are
TSH
FT4
FT3
Thyroid antibodies
Vit D
B12
Folate
Ferritin
But if the TSH is low (normal) then I am being over medicated by taking the Levo.
Not necessarily. TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). When there is not enough thyroid hormone (natural or replacement) TSH will be high.
If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
You can only know if you are overmedicated when you have FT3 tested at the same time as TSH and FT4. T4 and T3 are the thyroid hormones. It's T3 that is the active hormone that every cell needs, T4 converts to T3, and if FT3 is over range that generally means we are overmedicated.
I am afraid that the doctor may reduce or stop my Levo and I know I will gain more weight plus I have all the other symptoms of being hypo not hyper.
If you are diagnosed hypothyroid then Levo is for life, it's replacing the hormone your body can't produce. If your results are showing overmedicated then it's understandable that a GP would want to reduce your dose. Unfortunately, GPs are told that TSH is the only result that matters, which is rubbish. As explained, it's the FT4 and more importantly FT3 that tell us what we need to know and that's why it's important that they are both tested before any reduction in dose is made. If FT3 is not over range, you are not overmedicated.
When I asked the doctor how I could go from years of being hypo to hyper she said she didn't know!
GPs generally know very little about hypothyroidism, many endos know very little also as most of them are diabetes specialists.
If you have thyroid antibodies this is autoimmune thyroid disease aka Hashimoto's and it's typical for swings from hypo to "hyper" to happen as the immune system attacks the thyroid, when this happens symptoms and test results can fluctuate but they settle down again when the attack is over. But you need thyroid antibodies testing to know if you have Hashi's.
Please advise me whether to take the Levo before the blood test. I will post again when I get my results.
Thank you for your explanation. I normally take my 75 mcg of Levo anywhere between 6 and 8.30 am depending on when I wake up. My appointment is at 11.20 am and as that is not until September 2nd I don't want to try and make an earlier time because I will probably have to wait even longer.
If I delayed taking the Levo nearer to 11.00am gradually over 2 -3 days before the blood test so I'm nearer the 24 hours gap would that be ok?
Just change the time of the Levo the day before, but you need to be aware that a blood draw at 11.20am will give a lower TSH than a blood draw at 9am and you will need to fast and drink water only before the blood draw so as not to lower it any further, see first graph of TSH levels in this post here (and the lower your TSH the more convinced your GP will be that you are "hyper" or overmedicated:
While waiting to get new blood test suggest you get hold of these previous results that caused dose to be reduced
Just testing TSH or TSH and FT4 is completely inadequate
If you were over medicated, and that seems not likely, GP should have reduced dose a SMALL amount. Perhaps to 125mcg
You are legally entitled to printed copies of ALL your blood test results and ranges.
UK GP practices are supposed to offer 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.
come back with new post once you get these previous results and members can advise on next steps
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