TSH down but I still dont feel good?: Hello... - Thyroid UK

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TSH down but I still dont feel good?

000ggg
000ggg

Hello everyone,

I had my latest bw and tsh is down but I’m still fatigued and symptomatic, is something else going on? I’m taking 2-3 5mcg t3 and 1 25mcg levo. Here is the bw: tsh is .98 from 2.3, and 4.26 before that, range .270-4.2

t3 is 154 up from 112 and 80 before that. range 80-200,

Ft4 is .96 down from 1.02 and 1.44 before that. Range .93-.1.70

Vit d 25 hydroxy is low 21 down from 22 range 30-80

Pth is high 85.3 up from 60’s range 15-65

Mchc is low 32.2 range 33-37 rbc and hematocrit are normal

Magnesium is 1.9 range 1.6-2.6

B12 is 1069up from 250 range 232-1245

A1c is 5.4

Any ideas here?

Blood Work done June 27 2018

38 Replies
oldestnewest

Looks like you got the wrong T3 test there. That's a TT3, which doesn't give any useful information. You need an FT3. But my guess is you're under-medicated.

Why do you say 2-3 5 mcg T3? Don't you take the same amount every day?

000ggg
000ggg
in reply to greygoose

My endo won’t do ft3. In nys I can’t get it done myself. But I know t3 is up because it went up from 80 to 154. Tsh is down also, a lot, so something has changed and f t4 is lower. Is it my pituitary? Yes I’m increasing to 3 pills but I often forget and I increased it on my own and I don’t want to run out of it, my official dose is 2x 5mcg.

greygoose
greygoose
in reply to 000ggg

With T3 you need a steady, constant dose, otherwise the body will not feel secure in reopening all the closed receptors, so symptoms will continue.

Do you know what a TT3 test is? It tests both bound and Free T3 - the Total T3. The body can only use FT3, so you need to know how much you've got. The fact that your TT3 has risen does not automatically mean your FT3 has risen. I cannot comment on your FT4 because you haven't put the ranges - please, always put ranges.

I doubt there is any connection to the pituitary, you're probably just under-medicated - you're only on a tiny weeny dose. But, not really possible to say without the FT3, I'm afraid.

I would also advise you to cut out all the excess words in your list of results, if you want people to read to the end. For example :

Date:Jun 27, 2018 01:31 p.m. EDT

Reference Range:< 150 mg/dL

Cholesterol, total

Learn more about this

173 mg/dLCholesterol, total

All you need to put is :

Jun 27, 2018

Reference Range:< 150 mg/dL

173 mg/dLCholesterol, total

And, only put the date once, if all the tests were done on the same day. That would make the whole thing shorter and easier to read. I confess, I made no attempt to read any of it. :)

000ggg
000ggg
in reply to greygoose

I’m getting one dose in am and one around 5. Still tsh has dropped steadily after taking t3 and t3 has risen. so it’s doing something unless it is my pituitary. People here told me several times it was my high tsh that was making me feel ill, but tsh is now normal and a lot lower, below the stated feel good range and t3 is up, so it can’t be under medication. Why would tsh drop? It should increase if it is undermedication.

I’ve put the relevent ranges at the top, it is taking too long to edit this. It doesn't matter if I know, I think I did at some point, cause my doc won’t do ft3 as I said. Doses vary for everyone, since tsh dropped and t3 is up it worked, also my bg blood glucose and cholesterol are much better, cholesterol was not bad at all but ldl dropped, so it is working. But I still feel like crap.

shaws
shawsAdministrator
in reply to 000ggg

I wouldn't bother splitting doses at all as it is time-consuming in a way and you have always have to have an empty stomach as food interferes with the uptake of the hormones.

The doctor who wrote the following took 150mcg of T3 daily (in the middle of the night) so nothing interfered at all with his dose).

web.archive.org/web/2010103...

All of his patients took one daily dose of NDT or T3. He would not prescribe levothyroxine at all.

000ggg
000ggg
in reply to shaws

Thanks, I will read this and come back with questions.

000ggg
000ggg
in reply to shaws

I dont see anything specific there about doses and I’m sure he charges alot for email/ phone consults so this is not an option for me. I also believe the blood work does show t3 is helping me on some level as well as the fact my bg is much better and more stable. I have had to increase insulin and eat one small meal more a day to regulate bg as well but I have gained weight, about 10 lbs.

I think it is the insulin and the t3 maybe. I can’t imagine taking such a large dose though. T3 gives me palpitations and it was difficult for me to increase even to 2 x a day. When I split the dose I notice bg is better rather than taking it all in early am before I sleep. I think it may be upsetting my stomach because I was having more runs and vomiting episodes but they were prolly viruses. I did stop magnesium and a probiotic and all supplements not necessary and that helped the runs quite a bit. I noticed I was getting very nauseous after taking supplements. I’m down to krill oil and hyaluronic acid now and vit d 2-3000 iu per day.

shaws
shawsAdministrator
in reply to 000ggg

Dr Lowe died through an accident but he was an Adviser to Thyroiduk.org.uk and all of his information was free to read and for us to slowly work through our own efforts with advice from his website.

Unfortunately, when he died his website was withdrawn and I only have a few.

Doses are very individualistic. What suits one person may not suit another but few doctors nowadays don't really know how best for us to recover our health. They only look at the TSH and T4.

I am like many on the forum and being a member of Thyroiduk.org.uk and help/advice given freely of what helped members recover. It is trial and error because doctors and endocrinologists are poorly trained in this modern era of blood tests being a priority over clinical symptoms. It is symptoms that have to be removed.

000ggg
000ggg
in reply to shaws

Sorry, I wasnt aware he had passed. Very sad. Oh well, I guess I just have to keep struggling, I’m not sure what else I can do. Right now I am having severe reflux from aleve for bursitis in my foot and I need to just rest and eat a totally bland diet for a few days with lots of water.yes, but if you dont know for sure what is causing the symptoms how do you remove them? I’m worried about taking too much t3 etc too due to palpitations and everything else going on. I’m pretty much not eating enough to due the type one diabetes so I wonder if my body is reacting to not having enough food as well. I have felt like I am starving to death since I was put on insulin when I was in the hospital. I am eating one more meal per day now but I still feel like I’m starving so that even though I have gained 10 pounds! Two years ago I had lost about 20 pounds and I was in the hospital that was when I stopped eating any grain and sterilized all my dishes for gluten that is when I started to get better. But now that I have added in one more meal a small meal which would be a snack for most people per day I have gained 10 pounds over my normal, WTF? I have not been as active due to my foot and Knee injury and the fact that my blood glucose crashes all the time when I do any activity. I cannot eat to do the activity because it just spikes up to like 250. And never comes back down unless I correct It.

Why not just buy your own tests, then you can get Free T3 tested?

I’ve stated her 2 x I cant do that in new york state, and even if I could what am I going to do with it. I had it tested once with gp after a huge argument and it was normal.

Lovecake
Lovecake
in reply to shaws

Fantastic link. Thank you Shaws, so informative. So sad he is no longer around to continue his amazing work (and for his family).

greygoose
greygoose
in reply to 000ggg

Of course your TSH is going to drop when you take T3, that doesn't mean much. And, as I explained above, your TT3 rising doesn't mean that your FT3 is rising.

I don't think anybody did tell you it was your high TSH that was making you ill because TSH doesn't make you feel anything. It doesn't affect anything except the thyroid gland itself. It just indicates that your FT3 is low, and it's low FT3 that causes symptoms. I think that's what they meant, not that the TSH itself was making you feel ill. In any case, the TSH is a very bad indicator of thyroid status. And, the lower it goes, the worse indicator it is.

I'm afraid I just don't have any answers for you. If your nutrients are all optimal, you've addressed your stomach acid and your cortisol, then perhaps it isn't even thyroid related. Sorry.

000ggg
000ggg
in reply to greygoose

Yes, three people here did tell me that – I would have to search my older posts but that is exactly what they said. What do you think total TT3 rising means then? I did have FT3 tested once and it was normal, but taking T3 has helped me while taking T4 has not so it has to be helping me. Yet ft3 was normal, not low. I plan to take the prescription dose of vitamin D and see if that helps any. I don’t agree with the whole stomach acid theory that most people seem to believe here so I’m not even going to discuss that. I had my cortisol level tested and that was normal as well. However since I was still Fatigued my doctor wanted to do further testing if T3 did not help my symptoms etc. One of the tests however I think requires you to take a steroid which I can’t do because my blood sugar will go crazy.

Hidden
Hidden
in reply to 000ggg

000ggg,

Do you have thyroid disease or no thyroid, curious?

000ggg
000ggg
in reply to Hidden

Umm, lol, yes I have hashimotos. I think I said that somewhere in my post a few times. I had a scan done of my thyroid which showed it is grainy. Also 2 positive antibody tests. Anti bodies were higher last time but not super high. My father has hashimotos and his father had graves.

Hidden
Hidden
in reply to 000ggg

Wow, sorry I did not see that in your post everything you written was smashed together.

lidoplace
lidoplace
in reply to 000ggg

Could you take a trip to a nearby state where you can get it done ?

000ggg
000ggg
in reply to lidoplace

No, it is too expensive and I don't travel anymore due to my diabetes, my bg is more unstable when traveling.my life sucks bigtime 😺😳

Hi

I have to agree it’s not easy to take in your results without rereading them.

I am so much better than I was and I followed the following :-

Diet ( do you have thyroid antibodies? ) I eat a ketogenic diet.

Absorbtion- if you have stomach issues you may want to consider a stool analysis test. Do you have thyroid antibodies ? If so you need to be gluten free.

Vitamins

Your d3 is poor. Do you take k2 mk7? I swapped to a third brand before I found one that improved my levels plus you can get sprays too.

Adrenals- do you take your temp and pulse? You should. Dr Lowe was a great believer( and my specialist) You need to aim for 36.50 and do 4 a day if the average varies from any reading by mote than 0.4 your adrenals are struggling.

If you are unable to increase your t3 then there is something wrong with the foundations - diet vitamins etc.

My t3 was nil for over 10 years together with no dhea- I finally found out and swapped to ndt. I did get the basics in place first- never looked back.

Good luck

000ggg
000ggg
in reply to Howard39

Yes I have hashis with antibodies and so does my father. I’m doing all that, I prolly have celiac and I have type 1 diabetes which is the worst and which controls everything. My diet is specific to my gluten and grain intolerances and to my type 1 which controls everything I do. I can’t do ketogenic and wouldn't want to anyway. T3 has helped my blood glucose management a lot. I will reply more later, I have to get some sleep. I have re written the blood work with only relevant values etc. so it should be easier to read.

I don't take temp or pulse, most of time pulse is very confusing. My temp has mostly been lower and so is my father’s. 99 feels like a fever for me.

I’m not sure what you mean by 36.5 etc. ? I can only take vegan vit D with k2 I can’t take too much vit K due to having had a dvt.

greygoose
greygoose
in reply to 000ggg

I think you mean vit K2 - MK7, not mk2. :)

000ggg
000ggg
in reply to greygoose

Yep 😹

Low Vit D won't help how you are feeling. Get your free T3 tested, and ignore TSH, once diagnosed it's not that relevant although it's the only thing that GPs understand.

000ggg
000ggg
in reply to mistydog

I cant get free t3 tested, and have said that a few times here, my endo won’t do it.I had it done once only with an argument with my gp when I was first tested with positive tpo antibodies and it was normal. I’m taking vegan d with mk7,but my vit d keeps dropping and I may have primary hyperparathyroidsim or something else going on. The doc treating me is an endo, not a gp. I have been wondering if it is the vit d but it will not come up and I’m excreting a lot of calcium in urine.

I still don't understand why you can't buy a free t3 test from a private lab and ignore the endo. I'm sure you could find someone to take the bloods - it seems that you can order tests in New York, but you need to arrange the blood draw yourself.

I checked some online labs last year I think and they both said they will not Test in New York State because it’s not legal there. If you know of one that does please let me know I may consider doing it but I’m not going to pay a ton of money for it especially since my Endo probably won’t even accept it.

I think that Life Extension will sell you a test but you can't get the blood draw done by LabCorp. But since I'm in the UK, I don't know about US laws. It implied that it was something to do with not being able to charge in NY for tests not carried out on their premises. What about seeing a different doctor for thyroid - not your diabetes endo? - there seem to be a lot of what we in the UK would call "famous names" in New York,

Yep that was the problem as they told me it is not legal for the ny labs to do the bw etc, or something like that. My endo is going to do it though, along with adrenal and other tests. My next bw isn't until October though. I will start high dose rx vit D and see if it helps and try to get to a more daytime schedule, as well as continue on the 15mcg T3. Another doc gave me the name of an endo thyroid specialist so I may go, but he will just tell my endo etc prolly so it could be awkward. And I have heard thyroid endos are problematic so I don’t want to have a bad experience.

You will have to have it tested privately if your endo won't, although he's not worthy of the name if he doesn't,especially if you are taking T3.

000ggg
000ggg
in reply to mistydog

I cant do it privately in ny state. He is actually ok and helps me with my type one alot. Would not change because of that.

Low Vitamin D will make you feel lousy. How much Vitamin D are you taking? When deficient, high doses are needed until your level is brought up. I took 10000 I.U. for 1 month and now take 4000 to 5000 I.U. per day.

000ggg
000ggg
in reply to teenarocks

I’m taking 3-4000 iu vegan gluten free lanolin free drops with k2 daily. I go to doc soon and may try the higher dose rx one he recommended last time to see if it helps me feel better. I am worried about taking too much because I could cause kidney damage, but my GYN said taking it for a short period is not going to cause damage so I’m just going to try it. Endo said over-the-counter vitamin D is not regulated so it may not be working because of that. I do seem to be absorbing b12 because I supplemented that for two weeks and It jumped from like 252 to 1100 even though I’m not taking it anymore.

Why not see if you gyn will test ft3 ?

000ggg
000ggg
in reply to lidoplace

I asked him once and he wouldn't do it. I had to fight with my gp to do it. They just say it is the endo who should do it. I go for an ultrasound at gyn in 3 weeks, I will ask again. But if endo won’t look at it what is the point? It was normal last time before I even started treatment.

lidoplace
lidoplace
in reply to 000ggg

If you can get an ft3 along with other thyroid tests you will see where it falls in the range- then you have something positive to regulate your dose of T3 by as well as how you feel. The temperature scale for 36.5 is in centigrade and your thermometer in US is in Fahrenheit, that’s why it looks different.

000ggg
000ggg
in reply to lidoplace

Endo is going to do FT3 for next bw along with a bunch of other things such as a Acth, cortisol and tons more. He says he does not do it because it is a very tiny measurement and it is very hard to be accurate. I’m also going to start rx vit D at a much higher dose and see if it helps. I won’t get the new bw until October prolly though, but I have the rx already. I normally get full bw every 3-4 months due to type 1 diabetes. I will continue on 3x 5mcg t3 till then at least.

SlowDragon
SlowDragonAdministrator

Your FT4 is likely too low. You may need to increase Levothyroxine dose. 25mcg is tiny dose of Levothyroxine.

Many need good levels of FT4 and FT3

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