I have recently had blood tests for my thyroid. My TSH level came back as 7 but my t4 level was 11. My GP didn't want to put me on medication because he said that my t4 level was normal. I insisted on being treated because I was showing all of the symptoms. Fatigue, tired all the time, joint and muscle pain, not to mention the weight gain! I have been taking 50mg levothyroxine for just three weeks and not feeling any difference yet. I exercise 10 mins twice daily and take a range of supplements to help complement the medication. My GP doesn't think that I need another blood test for 3 months. My sister had Hashimoto's which is another level up from hypothyroidism but she was tested every two weeks in the early days.
Any hints and tips please, especially regarding my TSH and t4 level which my GP thinks is normal?
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When giving test results, please also give the reference ranges as these vary from lab to lab. TSH is easy enough to interpret because ranges for that are very similar; however, we see various ranges for FT4 from 7-17, 9-19, 11-23, 12-22 and others. So your result of 11 could be well in range, at the bottom of the range or even below range.
I have been taking 50mg levothyroxine for just three weeks and not feeling any difference yet.
That's because it's too early to make much difference yet. It takes about 6 weeks for the full effect of starting Levo, or a dose change, to be noticed. It's a long, slow process that can take many months to find your optimal dose of Levo, as it's a hormone it can't be rushed.
My GP doesn't think that I need another blood test for 3 months.
Your GP is wrong. Protocol is to retest 6 weeks after starting Levo, dose increase, retest again 6-8 weeks later, repeat every 6-8 weeks until your levels are where they need to be for you to feel well. From NICE Clinical Knowledge Summary, under "Prescribing Information > Levothyroxine:
The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.
The initial recommended dose is:
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.
For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.
Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.
Although that does say dose adjustment every 3-4 weeks, because it takes a good 6 weeks for levels to stabilise afte a dose change than the 6-8 week time scale is better.
I exercise 10 mins twice daily and take a range of supplements to help complement the medication.
Make sure that it's gentle exercise at the moment.
What supplements are you taking? There are some that we Hypos should avoid, some that need testing for and only should be taken if found to be deficient. We always advise testing the core nutrients as we Hypos are often deficient in the following:
Vit D
B12
Folate
Ferritin
It would be a good idea to test these, post results and reference ranges on the forum for comment.
Some general advice for all hypo patients:
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 (both Medichecks and Blue Horizon advise to leave Biotin/B Complex off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
Bloods should be retested 6-8 weeks after each dose increase
Obviously you need thyroid antibodies tested. Your sister has autoimmune thyroid disease (Hashimoto's) so it's likely you may do too
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 vitamin levels and thyroid antibodies at next test
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 or all vitamins
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
My sister had Hashimoto's which is another level up from hypothyroidism but she was tested every two weeks in the early days.
Well, not really another level up - or down, come to that. Hashi's is the cause of the hypothyroidism, it doesn't make it any worse or any better, just different in some ways. Have you had your antibodies tested to see if you have Hashi's? It does tend to run in families.
Testing every two weeks is a bit excessive and you don't gain anything from that. As Susie says, it takes at least six weeks for the levo to take full effect. Testing more frequently is just a waste of money. Unless there as some other sort of complication.
Your doctor thinks your FT4 is 'normal', but all that means is that it's 'in-range'. Doesn't mean it's right for you. But, doctors lack a little understanding of blood test results, and think that anything that's in-range has to be good. We know that's not true. Well done you for sticking to your guns!
I had a similar situation to you when being diagnosed - hypothyroidism runs in the family (we didn’t yet know it was autoimmune/hashimotos as no one had tested for it) and my test results weren’t outside normal (even my TSH was “normal” when I began treatment).
If the doctor you have seen won’t allow you to retest as advised above in 6-8 weeks of starting your dose, they’re clearly not very knowledgeable about the thyroids and the guidelines. I would urge you to see a different doctor at the surgery if possible.
Go armed with a copy of the guidelines about testing - SeasideSusie kindly provided a link. Also mention that hashimotos is in the family and remind them that autoimmune diseases tend to run in families. This should be justification enough to test your antibodies (both TPO and TGAB).
Hopefully antibody results should give you more ammunition to ask for a dose increase. As my prescribing doctor at the time said “with antibodies present, it’s only going to get worse so we may as well try”.
One last thing to consider, whilst you’re feeling unwell and you have low levels of thyroid hormone, it’s best to avoid physical exertion if you can. You mentioned that you exercise 10mins twice daily. You might find that stopping for now gives your body time to rest and doesn’t further deplete your thyroid hormone levels. Particularly with hashimotos (if it does turn out to be that and it’s likely with the family link/being the most common cause of hypothyroidism) the increased stress on your body might well worsen the attack on your thyroid.
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