Hi everyone! I'm new to the forum and looking for advice or suggestions on how to get my doctor to do more to help me. Two weeks ago I had my TSH and FT4 done at my request by my PCP and after receiving the results I requested additional tests. I was first denied because they said my results were in the normal range but based on the research I'd done I didn't agree and I pushed back and got them approved. My TPOab test and T3 test came back and my antibodies are REALLY high (that means Hadhimoto's right?). I asked to be referred to an endocrinologist and was instead just prescribed 25mg of Levothyroxine and told my target TSH range was 2.0 and to come back for bloodwork to check levels again in 6-8 weeks. They didn't give me a diagnosis, recommend changes in diet/lifestyle, or tell me anything but "take these pills". Should I push for more tests? If so, what should I ask for? I've already had to push for the few blood tests I got so I fear I'll be denied. Any recommendations based on your experiences would be of great help. I've been trying to do my own research on the Internet (that's how I found this forum) and have already started a strict gluten free diet (have been eating GF for 2+ years but cheated occasionally not realizing damage I might be doing to myself). Test results below for reference:
Bloodwork done @ 4pm non-fasted 4/27/16
TSH: 3.18 (range 0.35-4.0)
FT4: 0.9 (range 0.9-1.5)
Bloodwork done @7am fasted 5/12/16
T3(total?): 79 (range 58-159)
TPOab: 1549.9 (range <=5.5)
Thank you all in advance for your input.
Written by
Rockinout13
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In some cases they are told by hospital departments what treatments they have to try before they can refer you.
Few doctors tell people to make lifestyle and diet changes. One reason some don't bother is because they know they get ignored.
So you need to demand the information from them.
Also tell the doctor you are aware that people with thyroid issues are commonly deficient in ferritin, B12, folate and vitamin D so can you have these tests done. If they refuse do them privately.
In future when you have any blood tests done make sure they are done first thing in the morning and they are fasting. This means you haven't eaten or drink anything but water 12 hours before and haven't taken your medication. If you take vitamin and mineral supplements don't take them 48 hours before the test. (Ideally for some it should be longer but we can't be perfect. ) Bring something to eat and your medication to take immediately afterwards.
Thank you so much for your feedback! I did get my Vitamin D values checked:
Component VITAMIN D, 25-HYDROXY, D3
Your Value 32 ng/mL
Component VITAMIN D, 25-HYDROXY, D2
Your Value <4 ng/mL
Component 25-HYDROXYVITAMIN D
Your Value 32 ng/mL
Standard Range 30 - 100 ng/mL
I currently have been supplementing for last 6 months 3,000 IU a day. Since my results I've bumped it to 5,000 IU. I also take prenatal vitamins (was trying to get pregnant but now realize I need to get this under control first sadly), B12, calcium/magnesium, fish oil, a probiotic and 10,000 IU Vitamin A. We didn't run my iron or other vitamins so I'll ask. I have digestion issues so I have a feeling my absorption might be compromised.
I will make sure to do the am testing going forward. I have a feeling that my TSH is actually higher but because of the time of my testing it wasn't overly high (but still not optimal). That time a day seems to be the low vs am being the high. I researched it and that's why I made sure the 2nd round of tests was done 1st thing on on empty stomach. Thanks again!
Also on this forum we don't recommend you take multivitamins of any kind. This is due to them containing ingredients that may interact with each other, cheap fillers and the wrong doses of vitamins. In your case you are taking loads of vitamin A. It is highly unlikely in a Western society that you will be vitamin A deficient and as it is a fat soluble vitamin you can easily be taking too much.
Get your B12, folate etc checked and start a new post with the values and ranges. Even if they say normal they may not be.
Actually, as you've been taking vit B12, there's not much point in testing at the moment, because the result will be skewed. But if you can stop the B12 for four months, and then test, that would be good.
Also, when you take B12, you should take a B complex with it, to balance the Bs. But, Don't take that before getting tested because it contains B12.
When taking vit D3, you should also take vit K2, because the D3 increase absorption of calcium from food, and the K2 makes sure it goes into the bones and teeth, and not the tissues.
Vit D3 works with magnesium, and you shouldn't take D3 without it. No point in testing that due to the way the body handles magnesium. However, most people are deficient in magnesium, so just take about 400 mg. There are lots of different types of magnesium, so chose the one that suits you best :
I recently added a magnesium oil spray to my daily regimen and zi just looked and my B vitamin is actually a B Complex. I'll definitely be doing more research on the vitamins and their interactions with each other. Thank you so much for the information!
Hey Greygoose I didn't know about vit d & magnesium -I thought it was linked to calcium uptake. I can't leave a 6hr window due to taking my NDT throughout the day. (That is first thing in the morning, lunch time and before bed) I thought it was calcium you had to take away from thyroid hormones and that a four hour window? Can you explain further.....though Lord knows how I can comply! I take mine at teatime so there's currently approx a 5 hr window either side. Otherwise I'll have to set my alarm two hrs after bedtime to take my thyroid hormone (very low dose which helps me sleep) ....not sure I'm game for that. Is it really 6 hrs?
So I have read, yes. And that applies to all those tummy pills that doctors hand out like sweeties even though people ususally have low stomach acids and not high. Most of them contain magnesium.
There are several things you need to take four hours from thyroid hormone : calcium, iron, vit d and estrogen. And, to make it more complicated, you have to take iron four hours away from calcium supplements, and one hour away from food containing calcium, like cheese. Iron and vit D also have to be taken well away from each other. You see why I Don't recommend multi-vits?
It is very, very difficult for people multi-dosing thyroid hormone if they want to get maximum benefit out of everything, and could explain why a lot of people think thier hormone isn't working, or they can't raise their nutrient levels. These things just cancel each other out.
Well that is interesting I've been taking vit D3 supplements for several years....don't take calcium as there's plenty in my diet. I do take k2 with them. I've never noticed any difference in my thyroid uptake and have never read anything about vit D3 interfering with thyroid hormone uptake. May I ask where the source is of your info? Am curious...
The only window I have is at tea time which gives a break either side of roughly 5 hrs. Surely that is plenty! It's only four hours for calcium and that is the only one I know of that does interfere.
I'm sorry, I can't give sources. I read so much that it's impossible to remember where I read what. But, it's always said on here to leave 4 hours between vit D3 and hormone, too. There are a lot of things that interfere with absorption of thyroid hormone.
It's magnesium that is 6 hours. But you could over-come that by using a spray or taking Epsom Salt baths. That way it doesn't go through the stomach and come into contact with the hormone before it is fully absorbed. There are also vit D sprays.
'I've never noticed any difference in my thyroid uptake'
How would you notice any difference in your uptake of thyroid hormone if you've always done things the same way? It could be that if you stopped taking the D3, your T4 levels would rise.
Hey Greygoose I don't always take vitamin D3! So in that case I would expect a need to reduce my NDT. I don't. I cannot find any info at all on Vit D interfering with thyroid hormones. Therefore I don't see that it is an issue. Calcium and magnesium go together so and yes the evidence is definately there for calcium and and iron but nothing else. It's hard enough finding a slot for those Vits that definately DO interfere without creating more struggle to make allowances for vitamins that as far as I can find in my research have not been demonstrated to interfere.
'Researchers have found that calcium interferes with thyroid absorption just as iron, magnesium, zinc, selenium and aluminum hydroxide can. Levothyroxine (Synthroid) should be taken at least two hours before these minerals.
There are actually a large number of things that can interfere with proper absorption and function of a thyroid supplement. Coffee, fiber and medications such as strong acid suppressing drugs (proton pump inhibitors like Prilosec, Prevacid and Nexium) may all impact levothyroxine absorption.'
Thanks for the references Greygoose but they do not list vitamin D3 as causing a problem with thyroid hormone medication. I know about coffee and antacids plus I know there are other prescribed medications that can interfere. However my point is about vitamin D. I have looked again and can find no reference to it causing any interference with uptake of thyroid hormones. Not everything causes a problem just some meds and indeed foods.
I will thanks Greygoose but there is nothing out there on the web....have searched and searched. Am inclined to think it's a mistake that you've been told this. All the sources quote the usual calcium, coffee, goitrogens, magnesium.... Am sure if vit D came into the mix it would be listed. 😊😊
Thanks for trying to find the source of your wisdom!!
Well, now, there's a mistake in that! Goitrogens do not affect absorption of your thyroid hormone replacement - except soy. What they do is impede the uptake of iodine by the thyroid gland, so that it can't much as much hormone. But, if you Don't have a thyroid gland, or if you are on a full replacement dose, they will not affect you. Except soy, as I said.
And not just coffee, any source of caffeine. So, it would seem, nobody really knows anything about it!
Caffeine is caffeine whether in tea coffee, cola, dark Chocloate.....or wherever! Personally I like a little bit of it I just don't have it until an hour after my meds as was once advised by a specialist.
Maybe we need a separate thread started on this discussion as am concerned it's taking over the original post....
A) I know what Thyroid UK says about goitrogens, but I was studying goitrogens long before I found Thyroid UK. Very few people understand goitrogens, so there's a lot of nonsense talked about them. But they do not, in any way, shape or form, affect the thyroid hormone replacement that you take by mouth. Except for soy.
B) I've no idea what you're taking about in connection to caffeine. You appear to be saying the same thing as me, so I Don't know why you disagree.
C) Why Don't we just drop this discussion altogether because we aren't going to get anywhere with it. You just seem determined to disagree with me whatever I say.
My apologies to Rockinout13 for hijacking her thread.
Sorry if I've upset you Greygoose -not my intention. Not disagreeing with you about caffeine, Calcium or iron or soya completely agree with you !!
Nor am I out to oppose you. If thyroid UK has got it so completely wrong about the goitrogens maybe you should inforn them as you have clearly studied it in great depth so am sure they will welcome your research. I for one would like Coleslaw back in my diet!!
Wishing you well grey goose no ill feelings meant and yes let's leave it there I agree.
And my apologies too for hi-jacking this post! Sorry....
You're going to have to get your head round the fact that your doctor knows nothing and you're not going to get a specialist for this unless you're nearly dead.
Batty Durrant Peatfield book get that
And use us.
You're antibodies are raging but your TSH isn't dreadful in NE was 13 when diagnosed. You've caught yours early which is a good thing and no thanks to your doctor, all your own work.
As your antibodies are very high and you clearly have brains and discipline you need to cut out other things that may be upsetting you.
Heavy metals so filter your water
Flouride - change your toothpaste to flouride free
Dairy -adults don't need it
There doesn't SEEM to be a correlation between high antibodies and how one feels, but it's an indicator of how stressed your immune system is. Better to calm it down if you can
Your 25mg for 6 weeks is standard practice make the appointment for a repeat blood in exactly six weeks to keep this as short as possible. Then they'll increase by a little and repeat until your TSH comes down
It's going to be a long process finding the best combination of diet and supplements.
I started with five months in bed. I now self medicate and am on a six figure salary working stupid hours. So there is a way back to fabulous remember that.
Thank you so much for your response! I really appreciate your support. The first thing for me is diet for sure! No more cheating on GF for me. I haven't used fluoride toothpaste for 3 years or so and I've been dairy free for several years (lactose intolerant) so I have those things going for me. I've recently started drinking filtered water at home (even fluoride free) but at work I don't think it has that filtered out. I'm going to buy a glass jug and take my water to work with me now with your suggestion!
I'll fill the prescription, demand more info from my Dr. & schedule the re-test for the 6 weeks. I'll make sure it's done fasted & first thing in the am too. I was reading a double blind study that showed taking Levothyroxine at night had better results in lowering TSH levels more quickly. Have you heard of this?
5 months in bed?! I feel very fortunate that I have only started recently to have isomnia at night but exhausted in the morning wanting 10-12+ hours if sleep on weekends when I don't have to work. I can function fairly normally currently buy have noticed what people call brain fog or forgetfulness. I have very dry skin and hair (but my nails look good hahahah) and my face in the last year+ had started to lose luster and I feel like I'm looking older like I never have before (currently 33). My weight has skyrocketed 15lbs in 9 months (and it isn't a baby) and 30 pounds in 6 years despite a strict diet and working out 5 days a week. The last 8 months I've quit working out because I just need sleep at this point. Feeling like a fat, tired, lazy slob was what made me go to the doctor in the first place after taking some adrenal fatigue questionnaires online. Glad I've started this journey now instead of later because I could foresee it just getting worse quickly. Thank you again for your input. It gives me hope. I've ordered the book Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause by Izabella Wentz PharmD and will be doing as much research as possible. Thanks for helping me on my journey!
Welcome to the forum and well done for being the advocate for your own health. To add to the comments above, my understanding is that you are aiming for a TSH of 1 once you are on medication.
As you are already aware the ranges acceptable to our GPS aren't always best for our health though. This is true for the vitamins so read the many posts about ideal levels on here (I am no expert but plenty on here will advise).
Good luck. Hope you get what you need. Thyroid UK has a list of recommended Endocrinologists if that would help you.
Thank you! Google has truly been my friend and helped direct me to some great information. I'm now trying to put it into practice and lead my doctors down the path they (seemingly) don't know I should be going down. Too bad for them (lucky for me) that I'm stubborn and don't do well when people tell me no and like to know the "why" behind things. I'll start researching the vitamin levels as you recommend. Though I've been supplementing some of them (Vitamin A, B-12, D3, a multi, fish oil, calcium/magnesium, etc) I don't know my current levels on any and with my gut issues I fear that my absorption is less than ideal. I'll be requesting testing on these to see where I stand. Thanks again for your recommendations!
Do not take calcium unless you desperately need it. I know you Don't eat dairy, but dairy isn't the only food with calcium in it. Besides, the D3 will raise calcium levels. Taking calcium suppléments is like eating rocks! And can lead to kidneys stones and even a heart attack because your body cannot handle it very well.
Your absorption probably will be bad - another reason not to take calcium suppléments. Hypos usually have low stomach acid, so digestion and absorption is minimal. Do you have stomach problems at all?
Someone here recommended a book about micronutrients and another recommended researching the right vitamin levels here in the forum. I'm definitely going to look into all of it. Also, all of the vitamins I take currently are the Garden of Life brand made from whole did sources vs synthetic ingredients if that makes any difference.
As far as stomach issues, yes. Yes I have issues. I am easily bloated and gassy. I have a hard time with a lot of vegetables and do better with cooked vs raw though even that doesn't guarantee I won't have digestive upset. Sugar gives me gas/diarrhea though I crave it. I have a hard time with nurs... The only thing I'm for sure ok with seems to be grassfed beef & pasture raised chicken/eggs of which I only recently added back into my diet 6 weeks ago. I was previously epescitarian for the previous 5 years eating only fish & other sesfood (also doesn't cause me problems). I've seen lots of suggestions about betaine/HCL so I'm going to look into that. There is so much info and I've only recently begun to delve deeply into it and relate it to my symptoms. I'm also most often "slow" in the digestion area but also get (seemingly) random bouts of diarrhea.
Well, it certainly does sound as if you have low stomach acid. It would be a very good idea to try the betaine/HCL.
I wasn't talking about the vitamins you take, I was talking about the calcium. I Don't think there is such a thing as synthetic calcium, so no, that wouldn't make any difference. It would still be a good idea not to take it unless you absolutely have to. And to know that, you would have to have it tested. Besides, calcium is not a micronutrient.
Based on the recommendations, it sounds like I should quit taking vitamin supplements for several months, have all my values tested and based on results start taking only the ones I am low in. That could save me a lot of money that's for sure
A very good book to read re micronutriants is called The micro nutrient miracle. I also get an excellent multivitamin drink from them called nutrience, that is easily absorbed, does not put competing vitamins and minerals together and is taken in 2 separate drinks. It contains every possible vitamin. The book also helps you identify according to your health issues or medication which vitamins and minerals you will be lacking.
Your TSH needs to be 1 or lower and you T3 high in range and if on synethtic T4 that should be high in range too. Well done so far You are doing a good job of dealing with your GP.
I'm definitely going to check it out! Thanks! I was annoyed because I was told with the medication my TSH goal was 2.0 or under but my levels of 3.8 was normal before I insisted on more tests. Lame. Oh well, just the start of figuring it all out.
In America and most parts of europe a TSH of 3 or above is considered abnormal. In this country it has to be 5 or above and in some places 10. I dont think TSH tells us much at all. Some people come to this forum with a TSH of 50 but have no symptoms, others feel dreadful with a TSH of 2. More can be ascertained from pulse and temperature and it might be worth you taking your daily to see if your medication is having any effect.
Also taking cider vinegar is good for absorption and stomach issues.
I think the fact that you managed to get Levothyroxine prescribed with a TSH of only 3.8 is amazing. Most people have to wait until their TSH is at least 5-6 and often over 10. It might be a contributory factor that you are trying to get pregnant. You definitely have to have a lower TSH under those circumstances.
I'm really fortunate that I have gotten this far with only 1 doctor visit and 2 trips to the lab. I think it's because I armed myself with info before that I've been lucky to fall upon. I also think my prescription came from my antibodies being high (a test I was originally denied because my TSH was "normal") Which caused me to press to be seen by an endocrinologist who in turn didn't want to see me LOL. I'm going to keep pushing back and researching and you guys have all been great so far. This forum has been so helpful! Thank you all!
Hi I would definitely have a gut dysfunction test done which will show if you have low stomach acid, good or bad bacteria inside you. The results can be surprising but very easily corrected and if you do need Betaine HCL it will not be forever as it recovers the lost stomach acid. In addition until any issues are addressed you are possibly wasting money on vitamins etc that you are taking not to mention the thyroid medication will not be absorbed optimally.
The lab also tell you which antibiotic is best for you so as not to cause problems going forward. My GP loved that one!
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