I was diagnosed with Hashimoto's in 2018 and had all the usual symptoms, anxiety, hair loss, insomnia, mild OCD. Endo consultant said my TSH should be targeted at 1, eventually stabilised with 125mcg levothyroxine. All was going well until about 12 months ago when my TSH results started going up, first crept up to 3, then 5. Symptoms started coming back and spoke to the GP who wasn't interested and when I said that the target level was 1, said she disagreed and there was no need for the level to be that low. Had a medical assessment in July and they came back with TSH at 0.2. Doctor recommended reducing levo dosage to 100mcg. My dosage reduced at the end of September and had a blood test at the beginning of December, TSH came back at 9.92. GP has said that this is fine even though the lab recorded the results as high and over the high norm level! I demanded an appointment with the GP and first appointment is the 30th of January. I feel like I'm banging my head off a wall with my GP.
I noticed that in the thread some of the members said that you shouldn't take your levo on the morning of your blood test, I've never been told this so wondered if this is something you recommend. I always take my levo at the same time with nothing but squash. I also use HRT gel in the evening and at a recent HRT review the nurse said that this can affect the efficacy of the levo.
Any advice welcome 🙂
Merry Christmas 🎅
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JG1969
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spoke to the GP who wasn't interested and when I said that the target level was 1, said she disagreed and there was no need for the level to be that low.
Specialist trumps GP!
Oooooh, I'm afraid I would have responded with something like "But he's the thyroid specialist and he explicitly told me that so if you disagree can you please discuss with him because I don't want to become ill again when there's no need". I'm afraid I don't care any more what they think and I'm old enough not to worry about it!
I had a blood test at the beginning of December, TSH came back at 9.92. GP has said that this is fine even though the lab recorded the results as high and over the high norm level!
Your GP obviously hasn't got a clue about treating hypothyroidism so besides reminding her that the specialist is a thyroid specialist I would remind her of the following
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"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).*"
*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK
Email : tukadmin@thyroiduk.org
and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.
I noticed that in the thread some of the members said that you shouldn't take your levo on the morning of your blood test, I've never been told this so wondered if this is something you recommend.
This is something that doctors and phlebotomists don't understand so they wont have told you.
Always advised here, when having thyroid tests:
* 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.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
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.
* Nothing to eat or drink except water before the test - 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. Certain foods 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, split dose and 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 can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Thank you so much for your advice, I actually feel better just for having the information that you've given me and will be better prepared for my GP appointment!
Have a wonderful Christmas and a very healthy and happy New Year!
Originally my endocrinologist never said that I needed to fast for my thyroid bloodwork. Earlier this year, I read that it’s best to do all bloodwork, unless otherwise instructed, while fasting. When I had my thyroid blood test fasting, in August, in the morning, I didn’t take my 75 mcg of levothyroxine until after having my blood drawn and my TSH was 1.13; however, last week when I had my thyroid bloodwork done I fasting, in the morning, but I took my levothyroxine before have my blood drawn, my TSH was 2.33, so even though I took my levothyroxine just before my last test my TSH came back higher.
Hi Fearfracture... taking the dose of Levo shortly before the test does not affect the TSH.. it only affects the fT4.
The fT4 peaks quite sharply approx 2 -4 hours after the last dose is taken and then gradually falls to it's settled level... we want to avoid testing fT4 during this peak, we want to know the settled level so we can compare results accurately to previous tests. For this reason it is most consistent to always test 24hrs after last dose.
The TSH level is more stable and is the cumulative result of the dose that has been taken for the previous few weeks . It goes up and down a bit each day as it has a circadian rhythm .. highest very early a.m >> lowest early afternoon >> then gradually rises again .
Your increase in TSH from august to now (if both test were same time of day) from 1.13 up to 2.33 may be an indication that your Levo dose is a bit too low for you. If TSH has continued to rise at next test, or if you still have some unresolved symptoms of hypothyroidism , then consider asking for a small dose increase.
Here is a list of references for GP's advising them to keep TSH under about 2/ 2.5 healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower-
Fasting is a term I don't use, it gets interpreted as going many many hours without food and some people think it means nothing to drink either. It's only necessary to not eat breakfast before a test (and we always suggest an early morning test no later than 9am), so it's fine to have evening meal/supper the night before. And as it clearly explains in my post above this is because eating affects TSH.
I also explain that taking Levo before the test affects FT4 level, no mention of it affecting TSH, only timing of test and possibly food/drink (other than water) affects TSH.
Get your point about the word fasting but I’m in the US and fasting is the standard terminology used by the labs here. When you go in to have blood drawn, the phlebotomist asks if you’ve been fasting for 12 hours.
I misread your post—thank you for pointing out that you were referring to FT4.
Next time you encounter a GP who thinks it's fine to have your 'treated' TSH rising from 3 to 5 or who doesn't think 9 is a problem .... send them these references to read . (most are from sources considered sound by GP's ~ some are even from sources specifically advising GP's)
looks to me like the TSH 0.2 (that caused the reduction in dose) may have been a blip that should have been ignored ....the previous trend 3>>5 was clearly indicating the dose needed increasing a little. at that time perhaps to 125/150 alternate days .
And i would think 9 now means it needs putting back to where it was @125mcg then retest after at least 6/8 weeks.
p.s yes it is best to wait until after a morning blood test to take that days levo .. otherwise it can give a 'false' high result on the fT4 test ....So last dose around 24 hrs before test is recommended. but not much longer than that or else you'd get a 'false' low .
However in your case it probably wouldn't have made any difference as they seem to have been making dose decisions based on TSH results.. and the time of the last dose Levo doesn't affect TSH level.. it only affects fT4 level .
Time of day does affect TSH result.... TSH has a circadian rhythm.. highest very early morning .. falling to lowest early after noon then slowly rising again ... so it's always best to have TSH tests done around 9 am .. and to be consistent in future tests .
Hi, thank you for all the information. I don't know what my vitamin levels are but I take a high strength vegan multi vitamin every day. I'm vegetarian and when I was diagnosed with Hashi's they also found that I don't absorb vitamin D naturally (it came back as untraceable) so I was initially put on a really high crash course of supplements and now I have to take a minimum of 25ug (1000 IU) daily. When I had my medical in July they said that all my other blood tests were within the normal range.
I take a high strength vegan multi vitamin every day.
Multi-vitamins aren't recommended on this forum for many reasons.
1) The form a nutrient comes in makes a huge difference to how well a nutrient is absorbed. For example, some forms of magnesium e.g. magnesium oxide, are barely absorbed at all. Folic acid is not the best form of folate to take, and some people can't convert it to folate very well - or they do it very slowly.
2) Some of the ingredients in a multi-vitamin will block absorption of many of the other ingredients. Iron is a major problem in this respect.
3) It is best to test what you can and only take what you need. For example, taking calcium is fine if you are low or deficient, but if you already have good levels, it can end up lining your arteries.
Our resident guru on multivitamins is  greygoose . Read what she has to say here :
* folic acid is the least bio-available form of folate - methylfolate would be better
* taking vit C and B12 (wonder what form of B12 that is?) would mean that your body couldn't use the B12 correctly
* but given that it contains iron, you wouldn't absorb the folate and B12, anyway because the iron would block them, and all the other ingredients
* and then the iron would bind with the calcium, meaning that you couldn't absorb either of them, either.
All in all, you wouldn't get much out of that multi at all.
When I had my medical in July they said that all my other blood tests were within the normal range.
Which is pretty meaningless given that most of the so-called 'normal' ranges are far too wide, anyway. Always, always get a print-out of blood test results, so that you know exactly what is going on.
I’m am told hrt gel has no impact on Levo and taking both myself would agree. As to the Levo dose. I’d go by how you feel. I’d just take 125 (or a little more ) as you need. Docs don’t seem to notice you ask for repeat prescriptions a few days early, and if they do, say you left a box at somewhere/a hotel etc by accident.
Advice really is to take your Levo with water (not squash) and wait an hour before eating and drinking.
I would be tempted not to wait until the end of January to address this in your appointment with your GP but write a letter directly addressed to them outlining all the excellent information below why dosing by TSH is wrong and demand they put your prescription back up to 125 with immediate effect.
I always find getting my points down In writing and having the time to formulate all my argumemts better than trying to remember everything on the spot when the GP is being awkward.
There is no way they should be changing dose without testing your T4 and importantly T3. I would refuse any dose change based on TSh alone and unfortunately have to pay for my own blood tests to get my T3 tested.
I feel my best when my TSH is below 1.0 too. I have had Hashimoto's since 2006. It's sad that a lot of doctors just look at the TSH lab to regulate the thyroid. When I was first diagnosed my TSH was within the high side of the normal range, but I had symptoms. They also tested for the TPO which is very high. You have to be your own advocate and push for what you want. I do take my Synthroid at night before bed. That way I don't have to worry about taking it with food or other medications. That seems to work for me. I usually get my thyroid labs done in the late afternoon. Unless I have to do fasting labs.
"In conclusion, bedtime intake of levothyroxine in our study significantly improved thyroid hormone levels. This may be explained by better gastrointestinal bioavailability at night or by less uptake interference by food or medications. As shown in this study, bedtime administration is more convenient for many patients."
Just a quick note about the HRT. Kudos to your nurse for knowing that HRT can affect thyroid hormone levels. It's a common misbelief amongst doctors that HRT taken any way except orally will not affect your thyroid hormone levels. Many of us have found that not to be true. Particularly those taking T3 too it would seem, which would suggest it has an affect on T4 to T3 conversion. There's a definite research proposal in there (diogenes do you know if this an active research area?). In fact, in the BNF, my patches clearly state that they can affect both levothyroxine and liothyronine. Despite doctors denying this. I've had to increase my levothyroxine to counter the effect. Increasing it is relatively easy in comparison to trying to get an increase in T3. If you are taking oral HRT this will certainly affect your thyroid hormone levels. And as for your GP, ask them if they would be happy feeling so poorly because they're undermedicated. The numbers at the end of the day are just a guide, it's your symptoms that matter, as NICE guidelines attest. Follow the advice of the admins and you won't go wrong. Good luck and Merry Christmas 💜
HRT and phytoestrogen supplements don't seem to affect normal thyroid function, but may reduce the absorption of thyroxine medication in those with hypothyroidism. This in turn may hinder sufficient T4-T3 conversion
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you're very welcome . 
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