Recently I have had some blood work done and my TSH levels have been to the higher side, my t3/t4 levels have been fine the whole time. I then went on a diet and my TSH levels came back quite high. I was sent to a specialist and the doctor tried putting me into a box after my tsh spiked from the 6-9 tsh range to 39 tsh. Now diagnosed with hypothyroid. I wasn’t on any medication in the 6-9 TSH range. He kept trying to ask if I was having the typical thyroid symptoms, which I didn’t. Such as constipation, fatigue and so forth. I had started being on a diet for 2 weeks prior to the latest blood work which I told him but he didn’t consider this to be a factor to the TSH levels to rise.
I was keeping up with my daily routines very well despite my TSH being on the higher side. Was able to workout 4-6 days a week and tbh I was feeling great since I for the first time in a long time was filled with energy despite the apparently high TSH. He put me on hypothyroid medication and I haven’t felt worse ever. I have earlier been on levo in combination with my hyperthyroid medicine back in the day when I had Graves. I told him about this and said I had not responsed well to levo back then. He ignored this and put me on levo anyway.
Now on levo. I haven’t been able to maintain even my daily routine of getting 10k steps and have only been able to workout 1-2 a week. I feel so many mood swings, been crying a lot, I’m so fatigued. I have no clue what to do after starting the medication. I was feeling just fine prior to getting the medicine tbh, the only issue was weight gain. Prior to the medication I had plenty of energy and could easily manage my routines. I can barely get through my simple tasks. What’s happening and what can I do to a doctor that’s not listening?
i have added a photo of the blood results
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Sorry to hear you're feeling so bad, but it does happen that way, I'm afraid.
So, there's a lot to unpack in your post, and I have the feeling we need more information to get to the bottom of it.
From what you're saying I gather that you were once diagnosed with Grave's, right? And you were on block and replace? When was this? And, most importantly, how were you diagnosed? Did you have Grave's antibodies tested - TRAB or TSI? And, were they positive?
For how long did you take block and replace? Why did you stop?
my TSH levels have been to the higher side, my t3/t4 levels have been fine
I'm afraid that just telling us this, without any numbers, tells us nothing. Who said your FT4/3 levels were fine? What does 'fine' even mean? We need to see the results and ranges to understand. Because what your doctor calls fine might not be fine at all.
So, now you have a TSH of 39, is that correct? Two possibilities here:
* either your FT4/3 are far from fine, are in fact very low, causing your TSH to rise
* or something went wrong with the testing of your TSH, giving you a false high result.
So, was the 39 reading a one-off? Or did it happen several times? If so, were the fT4/3 also tested? And what were the results?
I was sent to a specialist
Yes, well, here we have a monumental error: believing that any doctor is a specialist in thyroid! Such creatures as thyroid specialists - doctors that actually know something about thyroid - are as rare as hen's teeth. If you mean you went to see an endo, you should know that 99.9% of endos are diabetes specialists with some very peculiar ideas about - and very little knowledge of - thyroid. That's why he's not listening. Because he doesn't understand what you're saying, and cannot answer your questions, so he ignores them.
But, if your TSH is really 39, and your FT4/3 results correspond, then you are hypo. Very much so. And, weight gain, and inability to lose it, are hypo symptoms. Not everybody has constiipation, fatigue, etc. Everybody has their own personel symptom list. And, you may have other symptoms that you don't associate with thyroid, or don't even really notice. But, there are over 300 known symptoms of hypo, so there's plenty to chose from!
He put me on hypothyroid medication and I haven’t felt worse ever. I have earlier been on levo in combination with my hyperthyroid medicine back in the day when I had Graves. I told him about this and said I had not responsed well to levo back then. He ignored this and put me on levo anyway.
It's true that levo doesn't suit everyone. It doesn't suit me. And, it's also possible to feel worse when starting it: new symptoms appear and old ones get worse. But, as you've only just started - I imagine, but you don't really tell us how long you've been taking it, nor what dose you're taking - it's too soon to know if it's going to suit you in the long-run.
But, for it to do its job, you need to have optimal nutrient levels. So, did he test your key nutrients: vit D, vit B12, folate, ferritin? If not, that should be your next step: get them tested. If they have been done then post the results and ranges along with all the other thyroid results and ranges, and we'll be better able to help you.
Most importantly, we need to know about antibody testing. It is possible that you never had Grave's in the first place. You could have had/have Autoimmune Thyroiditis - aka Hashi's. And now your thyroid is so badly dammaged that you are hypo and need thyroid hormone replacement. But, we'll only know if you tell us about antibody testing: have you had it and what were the results.
thanks for your reply. I’ll see if I can answer them as detailed as I currently have information
I was 16 when I was diagnosed with hyperthyroidism and later the docs due to some eye examinations and the bulging of my eyes told me I have Graves. I don’t have any record of that anymore. This was back in 2011. I was put on thycapzol and eltroxin in combination the first few months. I didn’t respond very well to this combination symptom wise, again I was very fatigued and it lead me to have to stop attending school as what I can remember but the doctors took me off it 2 months later and I only took thycapzol the next 3 years. I had been previously TRAb positive, but that came back negative now. TPO positive. (i don’t know what TPO is)
2014 I have been off medication ever since.
I got my TSH levels checked in 2016 and they were at around 4-5, but no one really acted on this back then.
flash forward to 2021 september - my tsh levels have been between 5-9 from september-november and december they’re at 39 (one off yes) haven’t had it retested which I was curious about that they didn’t want to revise the test.
Now i’m on 50mg for 2 weeks. I’m supposed to increase my dosage to 100mg this week consuming 100mg twice a week and 50mg 5 times a week.
all the doctors told me the t3/t4 were fine. they took test of b12, d-vitamin which according to them was fine too.
previously i had been TRAb positive but now that’s negative.
i have attached the latest abnormal blood work (39 tsh) also to mention I’m based in denmark. When I say speciliast it’s because I am now sent to the endocrinologist department and hormone disease department at the hospital
currently on Eltroxin 50mg 5 times/week and will increase as of this week to 100mg 2/week
thank you for the follow up questions! i appreciate it. it’s been hard going through again with very little knowledge and I feel like a child once more like when I was first diagnosed with hyperthyroidism when I was 16. i’m 27 years old now
OK, so the Grave's diagnosis was a long time ago. How are your eyes now?
TPO positive. (i don’t know what TPO is)
It's TPO antibodies that are positive. Those are the antibodies for Hashimoto's Thyroiditis. So, you now have Hashi's and are hypo. Unfortunately, the blood test results you posted are no good for us because there are no ranges. So, we have no idea how low your FT4 and FT3 are. Ranges vary from lab to lab and country to country.
I got my TSH levels checked in 2016 and they were at around 4-5, but no one really acted on this back then.
You are technically hypo when your TSH is at 3, so you were hypo in 2016. However, the ranges tend to be very unrealistic, so if those results were within the range, the doctors wouldn't take any notice of them, unfortunately.
flash forward to 2021 september - my tsh levels have been between 5-9 from september-november and december they’re at 39
Yes, so you've been getting more and more hypo, as more and more dammage has been done to your thyroid. Even without retesting to make sure that the TSH 39 wasn't a mistake, you are hypo and do need thyroid hormone replacement of some kind. But, if I'm not mistaken, levo is the only THR available in Denmark. Still, if you're really bad on it, it's worth asking if there's something else - or even just a different brand of levo - because you cannot live without thyroid hormone. It's like a diabetic has to have insulin.
Now i’m on 50mg for 2 weeks. I’m supposed to increase my dosage to 100mg this week consuming 100mg twice a week and 50mg 5 times a week.
Oh, that's just stupid! With a TSH that high, you should be on 100 mcg (not mg) every day! It's going to take you so long to find your sweet-spot if they just give you silly little increases like that! Tell them you would prefer to go up by 25 mcg, which is the usual increase, to 75 mcg a day. Being on too small a dose can make you far worse.
they took test of b12, d-vitamin which according to them was fine too.
I'm sorry, you cannot just take their word for that, you need the numbers: results AND ranges. Doctors know absolutely nothing about nutrition because they don't learn about it in med school. As long as it is in-range, they think it must be 'fine'. But, the ranges tend to be so wide that it's where within the range that the result falls that counts. B12, for example, depends whether it's a serum test or an active test, but the serum test absolutely needs to be over 550. So, do ask for the numbers.
And, I should think your next step should be to ask for an ultrasound of your thyroid, to assess the dammage done by the Hashi's.
I'm afraid your doctors don't know very much about thyroid, even if they are in the endocrinology department. This tends to be a universal problem. So, you are going to have to learn all you can about your disease.
thank you for the reply. I just added a collected screenshot of 9 pages of test results in the upper main post. there’s b12 levels as well. I don’t know if they’re useful at all. thanks for the input. I appreciate it. I’ve been in the unknown for so long and they dismiss basically everything nutrient related here apparently. my
sorry yes 50 mcg not mg as I wrote. they haven’t mentioned anything about hashimotos to me. I know very little. I had the ultrasound of my thyroid as well. He mentioned briefly that it looked like there was some damage and then I have the size results
It doesn't tend to be the over-range results we're interested in. Under-range is usually more important. But, we do need to know where in the range the result falls. So, we absolutely need the ranges to make any sense of the results - top and bottom numbers.
Sorry, but that photo is far to small to see. And, if enlarged, it just gets blurry. But, I can make out that there are still no ranges, so no good anyway.
Yes, doctors everywhere - for the most part - dismiss anything to do with nutrients because they just don't understand them. When my B12 was so low I was losing the use of my right arm, my then doctor said 'but it's only a vitamin'!!! So ignorant.
I’m sorry about the quality. I can only attach one photo per post. i’ll tried to click in and see the b12 - it says in the corner that according to them 200-600 is normal range. i’m 473 pmol/l
I repeat what I said above: with these results, your doctors should be increasing your dose of levo by 25 mcg every six weeks, not footling around with 50 mcg extra one day and none the next. They are playing with your life, here!
as to what I see on the chart they seem under range yes. This has not been mentioned to me. thank you for having me take a look one more time. i’ll check the b12 complex with methylcobalamin out! thank you. i’m not sure if it’s avail here but i can probably get a hand on in somewhere in eu in denmark as to the question before they mainly prescribe eltroxin. if they want to prescribe other levo or t3/t4 combo they need to get approved by the medical department to prescribe to the patient. only 2000 people have managed to get ahold of other type of levo here as what I can see from a recent study in 2020
Well, it's a bit early to start thinking about getting other forms of thyroid hormone. You're not even on a decent dose of eltroxin yet. And, that's probably why you feel so awful. If your dose is too low, it is enough to stop your thyroid's natural production, but not enough to replace it. So, in effect, you end up with less hormone, rather than more. Doctors think that taking levo tops up your T4 level. It doesn't. That's not how it works. So, you need to get on a higher dose as quickly as the protocol will allow: 25 mcg increments every six weeks.
OK, so that's a serum test, and the result is just a tad too low. If it were me, I'd be taking a good B complex to raise that. Can't give you any recommendations because I don't know what's available in Denmark. But, you want one with methylcobalamin (B12), not cyanocobalamin.
Couple of other questions following on from greygoose excellent reply
How much levothyroxine are you currently taking
Which brand of levothyroxine
Many people find different brands are not the same
Many people can’t tolerate Teva brand
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Standard STARTER dose levothyroxine is 50mcg, but dose should be increased slowly upwards in 25mcg steps after each blood test until TSH is ALWAYS under 2
Most people when adequately treated will have TSH around or under one
That’s likely to be somewhere around 1.6mcg levothyroxine per kilo of you weight…..or higher
Approx how much do you weigh in kilo
It’s frequently necessary to pace yourself, especially early on in treatment while dose is increasing
Essential to test vitamin D, folate, ferritin and B12
And you need past test results for TSI or Trab antibodies test results for Graves’ disease
And TG and TPO antibodies tested for autoimmune thyroid disease also called Hashimoto’s
It is possible to have Hashimoto’s and Graves together
Alternatively Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid and is often misdiagnosed as Graves’ disease if TSI or Trab antibodies aren’t tested to confirm
Graves is an auto immune disease that just happens to attack the thyroid :
Treatment is generally with anti thyroid drugs and / or a thyroidectomy or RAI thyroid ablation :
There is no cure - it's your immune system mistakenly attacking your body :
Can we please have more information :
I am with Graves diagnosed 2005 and treated with AT drugs and then RAI thyroid ablation and now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism.
I was told I had Graves when I was in my teens. I have had eyes issues ever since - bulging eyes etc. Tbh I dont remember much about it and my medical record doesn’t show from way back then. I was on thycapzol for around 3 years then was taken off it once my levels stabilized. I knew very little about the disease back then and just followed along. I was diagnosed with Hyperthyroidism in 2011 and was then told I had Graves and went through many eye examinations. I had all the symptoms of Graves back then especially my eyes, I was quite young. It all started when I was 17, so I don’t recall too much of it. I don’t really remember what happened but I was then again taken off thycapzol in 2014 once my levels according to the docs were okay. Now i’m diagnosed with hypothyroidism
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Oh despair! Worse than ever after trying diet and supplement way.
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