Hi I’m after some advice after some pleading with my doctor to keep my thyroxine at current level.
I’ve been taking thyroxine for 20 years, and am now 40. I have been on 125-175mg over this time.
Most constant dose is 150mg.
In October 2016 my doctor told me to drop from 150 to 125mg as he said I was taking too much and risking osteoporosis and heart problems. I did this and within weeks I felt awful. My bones and body hurt and I was exhausted plus gaining weight. I had another blood test and my tsh was still below range by my ft3 also plummeted to the bottom of the range. My doctor actually wanted to put it down further but I insisted I feel terrible.
He agreed to put it back up to 150 but on the agreement I had another test 6 months later and basically since then we have been battling over the reduction.
These are my last few years results. Do you think my thyroxine is ok despite tsh not being in range as my ft3 levels are mid range? I’ll add I constantly battle with weight and have been following slimming world for years to try and get weight down. My portion sizes are small too.
Thyroid tests
March 20 - taking 150
0.02 (range 0.3-5)
Serum free triiodothyronine 4.9 range 3.1-6.8
March 18 - 7.50am - taking 150mg
free T - 4.9 (3.1-6.8)
Tsh <0.02 (0.3-5)
Jan 17 following meds reduced to 125mg
free T3 is now 3.6 (range 3.1-6.8) and
TSH 0.17 (range 0.3 - 5.0) at 8.45am
Oct 16 - taking 150
Free T3 6.7 and
TSH 0.02 at 11.45am
2015 years ago test - taking 150
Free T 5.7,
TSH 0.02
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Bellsonit
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Presumably you don't have ranges for the 2015/2016 results?
Was FT4 tested as well as TSH and FT3? If so, can you add those results too please.
Have you ever had thyroid antibodies tested - TPO and/or Tg (Thyroid Peroxidase/Thyroglobulin). If so, what were the results.
Have you had nutrients tested i.e.
Vit D
B12
Folate
Ferritin
Again, results and reference ranges if you have, please.
Looking at your latest results:
March 20 - taking 150
0.02 (range 0.3-5)
Serum free triiodothyronine 4.9 range 3.1-6.8
Your FT3 is 48.65% through range. The aim of a treated hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
We need to know your FT4, tested at the same time as FT3, to see if they are in balance, which will tell us that you are converting T4 to T3 well. If FT4 is much higher, and that is needed to produce that amount of FT3, then you may have a conversion problem.
Conversion of T4 to T3 needs optimal nutrient levels, which is why it's essential to test those vitamins I have listed.
When we have the full set of results we should be able to help further.
Unlikely that your GP can get all tested, so you may wish to do what hundreds of us here do, and that is a private test with one of our recommended labs. Most popular here are:
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.)
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
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.
Come back with results, including reference ranges, and we will comment further.
I would want the Active B12 test offered by Medichecks, in my opinion it's the better B12 test.
The Total T4 test included by Blue Horizon isn't really necessary, the FT4 and FT3 tell us what we need to know, and the magnesium test included is unreliable.
As for cortisol, it might be better to look at thyroid first. If it looks like you might need to look into adrenals later then I'd do the 24 hour saliva adrenal test for cortisol plus DHEA. From Regenerus or Genova Diagnostics.
You are only over-medicated if the FT3 is over range. You do not have to alter your dose if you feel well. Your GP is confused about heart and bone issues and out of date.
Hopefully your levels of B12 - Folate - Ferritin - VitD are optimal ...
Your doctor doesn't know very much about thyroid - none of them do!
If you have enough T4 and T3 in the blood, which you obviously do, you do not need TSH. It's not a thyroid hormone, it's a pituitary hormone, and it only has two jobs: a) it stimulates the thyroid to make more hormone b) it stimulates conversion. It has nothing to do with hearts or bones.
Slimming world is not a good idea. It is based on low-calorie/low fat, neither of which are recommended for hypos. In fact, they're not really recommended for anyone, and although some people lose weight on it, they will probably put it back on at some point, because it is not sustainable. Also, if you eat their brand of… whatever it is they sell, I suspect they contain soy, so you're not going to lose weight with them. The soy will make you more hypo, and therefore more likely to put on weight. Just eat normally:
Plenty of fresh fruit and veg, plenty of protein, plenty of good fats: olive oil, butter, animal fats, coconut oil, nut oils, avocados… Not too much fibre, some carbs, about 2000 calories a day.
Avoid: all forms of soy - soy protein, soy milk, soy oil, soy flour, etc. - processed seed oils, artificial sweeteners - which means avoiding all processed foods because they contain all three of the above.
Avoid low calorie diets - you need calories to convert.
Don't worry about goitrogens, they're a red herring.
Get your nutrients tested: vit D, vit B12, folate, ferritin. Supplement those which are sub-optimal, with their co-factors. People here can help with that if you're not sure.
If you have Hashi's, a 100% gluten-free diet might help with symptoms. Or, failing that, a dairy-free diet.
Hi both, this is really helpful thank you - I don’t get any other results from the gp than this - so thanks for the suggestions on further testing. Certainly have nothing relating to vitamin levels and really interesting to see that they impact on thyroid levels.
I have always wondered about my thyroxine dose since I have to try really hard to keep my weight down and my bmi is around 27.
Yeah sorry I don’t seem to have some of the results which is annoying. Though I was pregnant and breast feeding during those times so I think my results are at the hospital rather than surgery which is probably why they couldn’t give them to me??
Thanks for all of this I will check out the blood tests
you will struggle to lose weight with a free t3 that low ( in my experience). As above, if you get your vitamins tested and bring them up to opyimal levels, increase thyroxine so your free t4 and free t3 are in the upper range, then you will naturally burn more calories. I did every diet under the sun and gained weight regardless- I actually lowered my metabolic rate by constantly going on diets. once you have got your thyroid levels up you may want to think about getting a fitbit or similar and tracking calories burnt ( make sure it has heart rate monitor- you can get them for about £20 on ebay or facebook marketplace), then also track your calories in on my fitness pal, I did this and lost 4 stone in total, after I got my thyroid levels sorted. It may be that you need to go back to your GP to ask for an increase in thyroxine once you have your thyroid results back- I had to do this for my mum recently as her GP wanted to reduce her thyroxine despite her free t3 being 22 percent in range, the GP refused so my mum is now having to look at purchasing her own thyroxine to add to her prescribed amount. This is a ridiculous situation to be in, but as I have been self medicating myself for 5 years having spent loads of money, I am no longer surprised at how badly thyroid is treated ( I am the same as you a working mum, its hard!). I also seen beloe that you do intense workouts- with a free t3 that low you may not be doing yourself any favours- try to stick to moderate intensity workouts or weight resistance training- you won't lose weight by depleting your t3 levels, you will just feel tired- and if you are dieting at the same time you may cause your body to lower its metabolism even more. I am a PT so have a little knowledge on this- I know it is frustrating but if you get the tests done and nurture your body you will benefit long term
Thanks greyswan - I must have replied as you were posting.
I’m definitely going to get the additional tests done, it might be a few weeks as I’m between jobs but I think it’s worth it as - ok I’m a mum of 2 boys age 5&8 - but I’m constantly tired and get brain fog, my fitness levels are decent enough as I do go to the gym 1-2 times a week and do intense workout.
If I get a full test done is it likely that will persuade the gp on medication?
And that’s really interesting about slimming world and soy. I don’t really have soy in my diet but I do try hard to stick to the plan so yes I would say my diet is low fat and quite limited on the sugar side too.
Good vitamin levels improve conversion of Ft4 to Ft3
So it’s extremely important to regularly retest vitamin levels and many/most thyroid patients need to supplement virtually continuously to maintain optimal vitamin levels
If cause of your hypothyroidism is due to autoimmune thyroid disease (Hashimoto’s) low TSH is extremely common, because levels hope about so much
First step is to get FULL thyroid and vitamin test as explained so well by SeasideSusie
Few doctors are aware of any clinical symptoms of hypothyroidism. Most only take notice of TSH alone for adjusting/diagnosing dose.
The fact is that TSH i.e. Thyroid Stimulating Hormone is not a thyroid hormone, it is from the pituitary gland and rises when the thyroid gland is beginning to struggle, as it tries to flag the gland into supplying more hormones. Doctors believe, if it is below range, that we're on too much hormone and we've become hypERthyroid but that's not the case.
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