This is my first post, so I'll try and include as much relevant info as possible.
I've had an underactive thyroid for over 20 years, (I'm in my early forties now) but over the last 18mths my results have been all over the place and I have been feeling very unwell, even more tired than usual, weight gain, brain fog and heart palpitations. I was on levothyroxine 225mcg My FT4 was 35.4 & TSH 0.04 (August '18). My dose was reduced, but I felt no better but my blood results had improved. In October last year, I went privately to see an endo that had more experience dealing with thyroid issues, he has continued to reduce my dose by 25mcg after every blood test (see below) as my bloods seemed to be a bit erratic, the heart palpitations eased but the other symptoms persisted and I became increasingly lethargic. Finally, (end of April) he put me on 5mcg T3 x2 and 100mcg levo daily for a 3 month trial, at my appointment last Friday I told him that I was still feeling lethargic, aching, weight gain etc. expecting to have him slowly increase the dose of T3 as previously discussed or at the very least continue the 3 month trial, instead he said it clearly isn't working and told me to stop taking and go back to levo 100mcg x 4 days & 125mcg x 3 days. I feel like I've hit a brick wall and am back to square one!
I've included my results from Oct' 18, I'm taking Vit D 3000iu daily as I was low when tested and have adopted a gluten free diet. I have also followed the advice on here regarding times to take last dose before being tested.
Ref range: TSH 0.35-5.5 FT3 3.5-6.5 FT4 10.3-22.7
Oct '18 tsh 0.11 ts3 3.5 ts4 20.4
Jan '19 tsh 0.04 ts3 4.0 ts4 25.6
Feb '19 tsh 0.08 ts3 4.3 ts4 24.0
March '19 tsh 0.03 ts3 5.0 ts4 28.2
Apr '19 tsh 0.13 ts3 3.7 ts4 18.7
June '19 tsh 0.09 ts3 4.4 ts4 15.8
Calcium & cortisol tests all came back within normal range.
Any advice would be gratefully received,
thank you.
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HBC76
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I was on levothyroxine 225mcg My FT4 was 35.4 & TSH 0.04 (August '18)
Do you have a result for FT3 from this time? No worries if not because your other results tell us what we need to know.
This result from when you first saw the endo
Oct '18
tsh: 0.11 (0.35-5.5)
FT3: 3.5 (3.5-6.5)
FT4: 20.4 (10.3-22.7)
screams poor conversion and the endo should have initiated the additon of T3 immediately.
I take it this result:
Apr '19
tsh: 0.13 (0.35-5.5)
FT3: 3.7 (3.5-6.5)
FT4: 18.7 (10.3-22.7)
was before the addition of T3 and this result:
June '19
tsh: 0.09 (0.35-5.5)
FT3: 4.4 (3.5-6.5)
FT4: 15.8 (10.3-22.7)
was when you were taking 5mcg T3 x2 and 100mcg levo.
Although your private endo appeared to be thyroid friendly by adding T3, it now seems that he hasn't got a clue. Your June results show that your FT3 was going the right way, and you should have had an increase in your dose of T3. Your FT4 may or may not be right for you. Some of us on combination Levo/T3 do OK with a low FT4, some of us need it higher in range. FT3 is usually best in the upper part of it's range for us. After many, many months of tweaking doses, I found my optimal levels for both FT3 and FT4 are 75% through range.
Also, did your endo test thyroid antibodies - Thyroid Peroxidase and Thyroglobulin - to see if your hypothyroidism is caused by autoimmune thyroid disease, aka Hashimoto's? Or have you adopted a gluten free diet because you've already had them tested and they were positive for Hashi's?
What are your current levels for
Vit D
B12
Folate
Ferritin
and what supplements are you taking?
Are you going to continue with this endo? Your results - if your nutrient levels are optimal - show the need for an increase in dose of T3, and you may also benefit from an increase in Levo (don't change both at the same time).
Hi, thank you so much for taking the time to reply.
I dont have a FT3 result from Aug'18 as it was via my GP.
Yes, you are correct, April result was prior to introduction of T3 and June's results were after 6 weeks on combination treatment.
As far as FT4, I have always faired better sitting higher in the range but unfortunately, my endo didn't want to hear that last week.
I was tested when first diagnosed and told that it was Hashimoto's, but I only adopted a gluten free diet this year after reading posts on here, my endo did not agree with it though.
He has requested no further tests for Vit D etc. and I'm not taking any supplements other than vit D 3000iu as mentioned.
My feeling regarding my endo, is that I'm wasting my time, we seem to be going round in circles and I feel no better.
He wants to check my bloods in 6 weeks, thyroid function, lupus, glandular fever and rheumatoid.
I was tested when first diagnosed and told that it was Hashimoto's, but I only adopted a gluten free diet this year after reading posts on here, my endo did not agree with it though.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned and ignore those doctors who don't agree with it.
Some members find that a gluten free diet helps, and here's some general information about Hashi's.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed
As far as FT4, I have always faired better sitting higher in the range but unfortunately, my endo didn't want to hear that last week.
There are a few of us who need FT4 higher in range, it's a pity so many doctors are so ignorant and closed minded about thyroid treatment.
He has requested no further tests for Vit D etc. and I'm not taking any supplements other than vit D 3000iu as mentioned.
Do you know what your Vit D level was, just checking to make sure you're taking the right dose of Vit D. Levels should be retested 3 months after starting to supplement.
The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml). It's important to keep an eye on levels - retesting twice a year - to ensure we stay around the recommended level.
As you have Hashi's, for best absorption an oral spray is recommended (eg BetterYou) or sublingual drops (eg Vitabay Organics) as these bypass the gut.
Vit D has important cofactors as recommended by the Vit D Council -
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 tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
Now that we know you have Hashi's, it's important to test the other nutrient levels. Hashi's often tends to lead to low levels or deficiencies. If your doctor wont do them then possibly the cheapest way is to do a full thyroid/vitamin bundle with one of our recommended labs (ask for details if you wish to do this, they offer fingerprick tests or venous blood draw at extra cost).
My feeling regarding my endo, is that I'm wasting my time, we seem to be going round in circles and I feel no better.
He wants to check my bloods in 6 weeks, thyroid function, lupus, glandular fever and rheumatoid.
You could be wasting your money as well, he isn't very thyroid friendly if he isn't going to continue with your T3. Can your GP do those other tests?
I was told to take vit D for 3 months only, I have continued to take but will look to try an oral spray.
I think I have a lot of reading up to do and possibly look for a new endo armed with a bit more knowledge. If possible, could you give me the details of a lab where I could test my levels.
Is it common for people to self medicate and use lab tests to monitor their levels? I'm just wondering whether to continue T3 or listen to advice from endo and waste another 6 weeks!
Thanks again for your help, I cant believe I've had this for so many years but been given so little advice from drs etc.
We have a lot of experienced patients on this forum, whose collective knowledge knocks into a cocked hat what doctors seem to know about treating hypothyroidism and vitamin deficiencies.
So, Vit D was 39.81nmol/L = 15.92g/ml
To reach the level recommended by the Vit D Council (125nmol/L or 50ng/ml) they recommend supplementing with 4,900iu D3 daily (nearest is 5,000iu)vitamindcouncil.org/i-teste...
Retest after 3 months to check your level.
As you've been taking 3,000 you might want to recheck your level now and base your new dose on that result.
Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public which costs £29:
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 Serum B12. Medichecks does Active B12.
Serum 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 Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
You can post results/ranges on the forum for comment.
Some of us find fingerprick tests easy, some struggle. I can confidently fill one microtainer, I struggle to fill 2. If you want to give the fingerprick test a try, ask for tips, I've written a little help guide about that. Or you might prefer to pay the extra for the venous blood draw. Whichever you decide, for thyroid tests we always advise the following:
* 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, leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. 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 will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Is it common for people to self medicate and use lab tests to monitor their levels?
We have many members who self medicate and monitor their levels with either Medichecks or Blue Horizon. Of course, it's always best if a knowledgeable doctor looks after us, but they are few and far between unfortunately.
I'm just wondering whether to continue T3 or listen to advice from endo and waste another 6 weeks!
Mmm, difficult choice. Those of us who have helped ourselves to get well will know what we would advise, but it's difficult for a new member to have the confidence and trust to go ahead and self medicate.
Your results show that adding T3 was helping. Why your endo wanted to end your trial is a mystery. Depending on whether you want to spend any more money on him, or spend that money on helping yourself, is something you will have to decide. If you decide to see your endo again, ask why, when your FT3 level clearly improved, does he want to stop your trial.
I am based in Kent, but willing to travel for the right endo if anyone has any suggestions?
I currently take no supplements other than vit D 3000iu, I feel that I am hugely uneducated regarding my condition, SeasideSusie has kindly given me lots of advice and I will be reading up on all the suggestions.
I have got around 4 months supply of t3 and am seriously contemplating continuing with it and re-testing as you've suggested, I also fair better being higher in the range but my endo dismissed this. I am also going to order the thyroid and vit test as I have had no follow up test for vit D. I will post results when I get them,
I was only on 2 x 5mcg daily, so I have restarted this morning and will add a further 5mcg (3x5mcg daily at 8hr intervals) as suggested and monitor symptoms closely. This was the original plan with my endo until he decided to end the trial after 6 weeks due to no improvement in fatigue etc.
In the meantime, I will order test to check vitamins etc.
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