If anyone can direct me to how I can go about trialling or trying alternatives to levothyroxine, that would be fantastic. I am a health professional (not a GP or pharmacist) and have had an underactive thyroid since age 12. Ten years later and I still have similar symptoms which affect my daily routine at work and at home.
My blood tests usually show that my hormone levels are fine but I feel like GPs just dismiss my symptoms as the results are normal. An idea of what other tests I can do would be great. I am based in Manchester. Thank you.
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Elihads
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First thing is, do you have any actual blood test results? if not will need to get hold of copies
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. They can make nominal charge for printing but many will do so for free (£10 max)
How much Levothyroxine are you taking
Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested
Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies plus vitamins
If vitamins are too low then thyroid hormones can struggle to be used
If antibodies are high this is autoimmune thyroid disease (Hashimoto's) Food intolerance is common especially gluten and/or dairy.
Private tests are available if you can't get on NHS
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
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 hypothyroidism in Uk is due to Hashimoto's
I do have a full in-depth copy of my most recent blood test results. And I have a full test. Every year and it comes as normal. But my concern is whether I need further tests and also what if other medication out there is better suited for me. I'm not saying levothyroxine doesn't work, it's just that everyone won't respond the same way as we know.
Normal just means in the normal range. It doesn't mean good or optimal for you and statistically, most healthy people, for example, are at the bottom of the TSH normal range, so why it goes up way part where any healthy person is likely to be is a mystery. So post your actual results with ranges.
If you add your most recent results and ranges for a TSH, FT3 and FT4, plus TPO and TG antibodies. Also vitamin D, folate, ferritin and B12 results and ranges
If we have Hashimoto's low vitamins are very common. Many with Hashimoto's need to correct low vitamins.
Gluten and/or dairy intolerance is very common too.
Some find just correcting low vitamins and addressing food intolerances is enough to improve conversion of FT4 to FT3
Others need the addition of small dose of T3
Many find only one brand of Levothyroxine or Liothyronine suit them and certainly need to stick on one brand as different brands are not bio equivalent.
Teva Levothyroxine and Teva Liothyronine are the only lactose free brands available
My results are as follows from Winter 2017 followed by their ranges:
Serum TSH 3.21 mu/L
0.35-5.00mu/L
Serum free T4 15pmol/L
15pmol/L
Vitamin D2 says <10.0 nmol/L
It says 30-50nmol/L may be inadequate
Vitamin D3 it's 39.3nmol/L
Not sure what range/normal is for D3
Ferritin is 71ug/L
22.0-275.0 ug/L
Vitamine B12 307ng/L
187.0-883.0 ng/L
Folate 3.9ug/L
3.10-20.50 ug/L
Full blood count and of the specific cells are all normal.
There's other values listed also. Only for vitamins D metabolites has it said prescription. And I'm taking Hux D3 once a week as instructed. For thyroid function test it says "normal, no action, results consistent with euthyroidism".
If you can edit your post and add in the reference ranges for the results you have it would be helpful. It isn't really possible to interpret tests without the reference ranges.
To edit your post, click on the v beneath the post, then click on Edit. Make the necessary changes then click "Edit response".
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A TSH of 3.21, even without the reference range, is too high for good health. People who are hypothyroid generally need a TSH which is around 1 or a bit lower in order to feel well.
You might find this post of interest. It explains why a TSH of 3.21 isn't really healthy :
Okay, your TSH is too high for good health as I said above, and to lower it you would need a higher dose of Levothyroxine, say another 12.5mcg or 25mcg of Levo per day. You will have to try and persuade your doctor to raise your dose. The only other option is self-medication.
You haven't given a reference range for Free T4, so I can't be sure how good or bad it is.
To learn more you would need to get Free T3 and thyroid antibodies tested. Unfortunately GPs rarely test them. They can be tested privately with finger-prick testing.
Vitamin D2 says <10.0 nmol/L
It says 30-50nmol/L may be inadequate
Vitamin D3 it's 39.3nmol/L
Not sure what range/normal is for D3
Don't worry about your vitamin D2. It isn't important. The important one is your vitamin D3. The reference range you've mentioned will apply to your vitamin D3. For optimal levels we suggest that people aim for 100 - 150 nmol/L.
To raise a level of D3 from < 10 nmol/L up to optimal will require a supplement level of 5000 iU - 10,000 iU per day. Obviously the higher the dose the faster you raise your levels.
I've never understood why doctors think it is a good idea to dose people once a week with large doses of vitamin D. For many people it is more tolerable when taken in smaller doses every day.
Vitamin D is easily sourced on supplement sites and shopping sites, and it comes in various dose sizes. Prices vary a lot so shop around. A very good product is NOW Vitamin D3 5000 iU Softgels :
They are good because they only contain 3 ingredients : A capsule shell, vitamin D3 and olive oil.
Clutter raised a very low vitamin D level quite quickly, but I can't remember how she did it.
Some people don't tolerate vitamin D3 very well. It turns out that this is usually caused by a deficiency of magnesium. So if you struggle, start supplementing magnesium first then add in the vitamin D3 after a couple of weeks.
It is essential to take magnesium anyway. Vitamin D3 supplementing will raise your absorption of calcium from your diet. In order to persuade that calcium to go into bones and teeth magnesium is essential.
Find a magnesium supplements that appeals to you from these lists, and take roughly 300mg - 350mg magnesium per day.
Be aware that some types of magnesium act as mild laxatives - this may be good or bad depending on your requirements. Some types of magnesium also makes some people sleepy so take it in the evening, if you choose one of those.
The other thing you need is vitamin K2 (not vitamin K1). If you look at SeasideSusie 's replies she mention vitamin K2 quite often. There is more than one kind and I never remember which is which.
"Vitamin D3 it's 39.3nmol/L - It says 30-50nmol/L may be inadequate"
The Vit D Council recommends a level of 100-150nmol/L and with your level I would be taking 10,000iu a day for 2 weeks (140, 000iu in total). Then I would reduce to 5000iu a day and retest in May. If you have reached the recommended level (I prefer mine at the upper end of the recommended range) you will have to find your maintenance dose by trial and error, it may be 2000iu, maybe more or less. If you get out in the sun daily (some bare skin, no sunscreen) for half an hour or so, you maybe able to make enough naturally during the summer months between May and October and only need to supplement during the winter. I need to supplement all year round and I double my dose in the winter.
There are important cofactors needed when taking D3. Magnesium and K2-mk7. Magnesium helps the body use D3.
D3 aids absorption of calcium from food and K2-mk7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissue where it can be deposited and cause problems such as kidney stones and calcification of arteries etc.
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Your B12 is rather low. It's recommended to be over 550, preferably top of the range. You can take sublingual methylcobalamin for that.
Folate should be at least half way through range. When taking B12 we need a good B Complex to balance all the B vitamins and that will help raise your Folate level. I raised mine from bottom of range to top of range in 2. 5 months with Thorne Basic B.
Your ferritin level is 19% of the way through the reference range. The optimal level is roughly 50% through the reference range or a little higher, so around 150 - 170 would be a good level.
Unfortunately, it isn't a good idea to supplement iron without knowing your serum iron level and your transferrin saturation level.
If your serum iron was in the lower half of the range and your transferrin saturation was also low in range, then yes, iron supplements would be a great idea. Unfortunately there are people who have low ferritin, but high serum iron. Taking extra iron is likely to just push their serum iron higher, and in effect the iron will poison them.
You can find out more about your iron using the above link and paying for a private test. Or you could ask your GP to do a full iron panel. Very few of them agree to do a full iron panel.
I just realised that I did not mention yet that I have been taking levothyroxine. If this helps, I initially starting as 50mg when I was 12 years old but now slowly it has crept upwards. I am taking 100mg/125mg alternating days since over 2 years now. I shall look into the information you have all provided including supplements for vitamin D3. And yes it seems that my folate is at the lower end of the normal range 3.9ug/L range is 3.10-20.50ug/L.
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