Hi , I managed to get a print off on my latest blood test .... not really sure what it means ...
Been on levothyroxine for over 2 years now and have never once felt good on them , I'm exhausted all the time , get blurred vision , throbbing sensation in my throat , cant think clearly , sex drive is non existent, feel like I've got huge bags under my eyes , feeling anxious......that's to name a few.
Every time I go back to doctors its .... let's up meds for 2 months or let's drop meds for 4 months ....
Currently I'm on 75mg one day 50mg the next alternating .
It's unusual to have a TSH at the top of the range with FT4 also at the top of the range. The TSH is telling us you are undermedicated and the FT4 is telling us that you are taking the maximum amount of Levo.
When did you take your last dose of Levo before this test?
Do you always have the same brand of Levo?
Have you tried different brands of Levo?
Do you have autoimmune thyroid disease (Hashimoto's) confirmed by raised antibodies?
What are your current nutrient levels?
You were advised in reply to two previous posts about getting full thyroid/vitamin testing with one of the private labs, have you done this yet? It will provide valuable information that may help with your problem. Previous posts with advice to do the full testing:
Thanks for the reply , I had taken 50mg of levothyroxine on the morning of the test , I'm always on the same brand .... not tried any others , I dont know what my current nutrients are , I've not been told I have hashimoto's...... and I was hoping to get a full vitamin test through the doctor but sadly not happened yet .maybe I should do a private one
Each time I see a doctor its always someone different for some reason or another
I had taken 50mg of levothyroxine on the morning of the test
That has given you a false high FT4, it has measured the dose just taken not the normal circulating amount of hormone.
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 (which most labs do) it can give false results.
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
However, even for allowing for the false high FT4, it's likely that your normal measure of circulating hormone still would be higher than one would expect to see with your high TSH. This leads to the following questions:
* Did you take Biotin or B Complex in the 7 days before the test?
* Did you drink anything but water before the test, eg coffee, tea, coca cola, any caffeine containing drinks?
I'm always on the same brand .... not tried any others
It might be worth trying a different brand just in case you are reacting to any of the excipients. Check excipients of your brand and others here:
I dont know what my current nutrients are , I've not been told I have hashimoto's...... and I was hoping to get a full vitamin test through the doctor but sadly not happened yet .maybe I should do a private one
It's unusual for a GP to do all the tests advised, which is why it was mentioned to you before about doing a private test and links given to you and the name of the test which will be most useful. If I were you I'd do it as soon as possible as you've had this problem for so long.
Each time I see a doctor its always someone different for some reason or another
I think that's typical of most surgeries so if you want continuity rather than a different opinion each time then ask for your preferred doctor.
Hi Susie .....The reason I took my dose that day was because when I was on a 100mg a day of levothyroxine, I was doing exactly what you said to do ...... but on that dose I was over medicated and it wasnt showing up on the tests because I wasnt taking the morning dose ..... so what do you do for the best
when I was on a 100mg a day of levothyroxine, I was doing exactly what you said to do ...... but on that dose I was over medicated and it wasnt showing up on the tests because I wasnt taking the morning dose
How did you know you were overmedicated? I've had a quick look through your past posts and can't see one where you've said you were taking 100mcg and giving results on that dose.
If you test after taking your morning dose, your hormone level peaks 2-4 hours after ingestion of Levo, so your level will either be on the rise, at it's peak, or starting to fall from the peak, but it will not be at it's normal circulating level.
If we don't have a problem then our bodies produce thyroid hormone throughout the day as and when needed, we don't have just one major surge of hormone. When we have hypothyroidism and take replacement hormone, we're taking it in one hit, once a day, so it's obvious that testing after taking our Levo is going to measure what we've just taken. As Levo is a storage hormone and has a half life of 7 days, testing 24 hours after taking our dose gives a measurement which will be much nearer the normal circulating hormone. Most doctors don't get this, but we do have a few members whose GP or endo give exactly the same advice as we do on the forum about last dose of Levo.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you know if you have high thyroid antibodies?
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
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 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Early stage Hashimoto's the levels can move a lot ....that's why it's important to take high enough dose to reduce these swings
Extremely important to regularly test vitamin levels and over 80% of Hashimoto's patients find strictly gluten free diet beneficial
First step is to get FULL Thyroid and vitamin testing privately while still on CONSTANT unchanging dose of Levothyroxine
Making sure to get blood test done as early as possible in morning before eating or drinking anything other than water and last dose Levothyroxine 24 hours prior to blood test
Highly likely to show you need dose increase in Levothyroxine
Have you had cholesterol tested?
High cholesterol is linked to being hypothyroid and will improve when correctly treated
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Presumably this is TPO antibodies....range is typically anything over 34 is positive
Can you add range
If you have high antibodies confirm you have Hashimoto's also called autoimmune thyroid disease
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test all FOUR vitamin levels
it's absolutely essential to take Levothyroxine everyday
Every time your GP messes about and reduces dose of Levothyroxine vitamin levels will crash down
All four vitamins need to be OPTIMAL for good thyroid
Your GP should refer you to thyroid specialist endocrinologist
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels ....especially when under medicated as you are
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Having a week off levothyroxine on the doctors advice......this is to see if they are making me I'll ..... got an appointment next week to see how I'm getting on ... hopefully get in to see a specialist.
Why would you stop levothyroxine when you clearly need it? Your Doctor is giving you bad advice. I think you are on a too lower dose unless you are elderly like my Dad who is 78 and takes 100mcg. Get ready to feel unwell because you have stopped it cold turkey. I would get a Doctor who knows what they are going if I was you. Your TSH should be 1 or lower btw
What do you mean by making you ill? When we first start Levothyroxine it can take weeks or months to work because it is a long process. Having said that you might not get on with the fillers. When I took thyroxine I preferred NDT so I purchase some from Thailand and that suited me well. I would ask for a different brand if I was you. Also you are clearly undermedicated with a TSH that high no wonder you feel ill. The TSH needs to be 1 or lower and the T4 and T3 need to be in the the upper third of the range. Also all your vitamin levels needs to be at a good level because people with thyroid disease nearly always have low levels. This means your b12, Iron and ferritin, vitamin D and folate need to be at good level. My vitamin D was 7 and very low when I was first diagnosed it is now a 100.
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