I was put on levothyroxine just over a year ago - i had no symptoms but it appeared in a blood test when something else was wrong - it was slightly under.
For the past month or so I've been suffering with strange symptoms - my GP doesn't know what's wrong with me and doesn't know who to refer me to so said come back in 6 weeks if its still the same.
He ran some blood tests just to make sure it wasnt perimenopause or anything like that(late 30's)
I'm taking 50mcg levothyroxine - I had my levels rechecked recently and they are now 0.8 - no idea where that is on the scale but I've been told to continue with the meds. I think that might have been the TSH level??
That is the only medication im taking
I'm ravenous most of the time - i never used to be (even when my thyroid was under - never had any symptoms) doesn't matter what I eat i then still feel starving shortly after
I'm 5foot4 size 8 at the moment which is creeping up.
A typical day for me would normally be 2 boiled eggs with a slice of wholemeal toast for breakfast
Banana as as a snack with some low fat crisps
Roasted chicken breast in a wholemeal small wrap with salad for lunch
Either another boiled egg or some fruit/nuts as another snack
Evening meal would have been meat of some form with plenty of veg and not overloaded with carbs
Sometimes I would have fat free jelly for dessert or a low fat type lolly
That would always satisfy me but lately I'm eating probably double- sometimes more than that and the weight is piling on pretty fast to the point where my clothes are not fitting properly.
I dont exercise in the winter as much as i do in the summer but whilst I'm not constantly "on the go" i'm not sat on my bum watching tv all evening either.
Also I'm getting air hunger, dizziness, shortness of breath, a weird pressure across my forehead and almost like a fuzzy head and sometimes i feel like i could pass out any second - never have though. It also feels like i just want to lie down all the time.
I have animals and work with hay so thought it might be some sort of hay allergy although that would not explain the extreme hunger.
I have always worn a mask when dealing with the hay also and in the summer i take an antihistamine as i suffer with hayfever so i have started taking it again a week ago in case it is some form of allergy.
Could this be related to my thyroid or something else weird?
I'm 100% not pregnant by the way!
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IndiLucky
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They sound more like hypo symptoms than anything to do with the levo. 50 mcg is only a starter dose, you're probably under-medicated. But, if your doctor is only testing the TSH then he will have no idea that you're under-medicated. He should at least be testing the FT4.
Also, you are not getting enough fat in your diet. Eating fat does not make you fat. Not eating fat can have a lot of undesirable consequences. The body needs fat.
What you need now is full thyroid testing:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
Low nutrients can cause excessive hunger. And being under-medicated can cause weight-gain no matter what you eat. Solution: eat more - especially good fats.
I'm taking 50mcg levothyroxine - I had my levels rechecked recently and they are now 0.8 - no idea where that is on the scale but I've been told to continue with the meds. I think that might have been the TSH level??
Yes, 0.8 would be the result of a TSH test. It is not useful to test just TSH, for a full picture we need to test TSH, FT4 and FT3.
TSH is a pituitary hormone, not a thyroid hormone. The pituitary checks to see if there is enough thyroid hormone and sends a signal (TSH) if it detects there's not enough. It's the FT4 and FT3 which measure the thyroid hormones and these are the tests which are important. Once on Levo the TSH isn't much use at all. Unfortunately, doctors don't undertand this and most only test TSH.
50mcg is a starter dose and most people are on much more than this, typical dose is between 100-200mcg.
I would suggest that you get a full thyroid panel plus vitamins tested:
TSH
FT4
FT3
Thyroid antibodies
Vit D
B12
Folate
Ferritin
Always get a print out of your results from the receptionist at your surgery, it is our legal right here in the UK and making a record of your results will be a valuable tool in the future. Don't accept hand written or verbal results, always get a print out so there can be no mistakes.
If your GP can't or wont do all these tests (which is very likely) then you may want to do what hundreds of us here do and that is a private test with one of our recommended labs. The full set of tests is available as one bundle by either a fingerprick test or venous blood draw which costs extra:
Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... Currently on special offer but if the offer finishes you can use code THYROIDUK for a 10% discount on any test not on special offer
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test:
Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
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 can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Post test results, with reference ranges, when you have them for us to be able to help you further.
Wow thanks for the indepth reply! I am just about to order a test. With regards to when to take the levothyroxine in order to do the tests - I always take mine before bed which is usually 2 hours after my evening meal - i can't take it in the morning because i don't have chance to wait an hour before having breakfast = so does that mean I should not take it the evening before the test or would that then be 2 evenings I don't take it for?
Let's say that you take your Levo at 10pm. If you take it the night before the test, and you test, say, at 9am, then that is 11 hours. This will give you a false high FT4 result and you don't want that. If you don't take it the night before and your last dose is the previous night, then the time gap will be about 33 hours and that would give a false low FT4. So you need to find a way around the timing if you can.
What is your normal routine - what time do you rise? Do you shower/dress before breakfast? What time do you have breakfast? Do you need the bathroom before rising in the morning?
So I wake up at 6.30, jump in the shower, clean teeth, dress, eat breakfast with a coffee then literally out of the door and on my way to work at 7/7.10am - takes me an hour and a half to get to work (driving).
In order to take the levothyroxine in the morning I would have to be up at 5.30 - doc said it was fine to take it before bed as long as it was 2 hours after my last meal.
So for one morning i could sacrifice getting up at 5.30 to take it and then the next morning i would be able to do the blood tests or is that going to mess up the routine as i would then be taking it again that evening?
I could do the test the next morning at 6.30am would that work ? Assuming I'd taken the levothyroxine the morning before at 5.30? or would the test have to be exactly 24 hours so at 5.30? sorry this brain fog isn't helping!
If you order your kit over this weekend it will probably be processed on Monday and you should receive it perhaps Wednesday.
It's best to do the test and return it Monday to Wednesday so it arrives in time at the lab to be processed before the weekend so delay the test until the following week.
Next Friday night, delay your Levo until Saturday morning and take it one hour before you eat breakfast and have coffee, or if you need the bathroom before rising take it then (that is essentially Friday night's dose).
Next Sunday, presuming you don't get up as early as the days when you are working, you could take your Levo at a time to suit the rest of your routine, taking it one hour before food/coffee, but as close to the 24 hours time gap before blood test as possible (that is essentially Saturday night's dose).
Monday - do the test and take Levo directly after (that is essentially Sunday night's dose). Best to wait an hour for breakfast if you can, but if you can't perhaps you could manage half an hour.
With a blood test no later than 9am and fasting (water only from evening meal the night before) this will give the highest possible TSH. Leaving off Levo will give you a measure of the normal circulating hormone so you wont get a false high or false low FT4.
Monday night take your usual dose at the usual time and you're back on track.
ok yes thank you that sounds great - so let me just double check I have this right - saturday morning for example I wake up at 8.30 take levo straight away. Sunday morning do the same thing - monday morning take test at 8.30 - levo straight after then breakfast an hour after - is that right?
You need to allow a good half an hour to do the test...especially first time
Read instructions carefully
If you make a hash of it and do not get enough blood to fill the test tube ..send it off anyway. If it’s not enough they will send another kit. You can choose at that point to pay more and have private blood draw....if you find it too difficult
You have been left far too long on just starter dose. Likely vitamin levels have dropped low as result
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
Just testing TSH is completely inadequate
Low Vitamin levels lead to low TSH ....so you can see that being left on low dose and only testing TSH it’s a disaster
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
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