I have just received my results from Medichecks and am shocked. I seem to have gone from one extreme to another and not sure what to do. Would appreciate any advice you may have. I am only on 50mcg of Levothyroxine and have been on this dose for only 2 months.
The report that came with the test results called out the following:
*Low b12 levels - I did start supplementing with b12 spray late last year which made me feel strange/wired? So I stopped and wanted to wait to have this testing done first to get my base level without supplementing. Does anyone else get this weird reaction and if so how do they deal with that / are there alternative methods. The report said I could have a full blood count to check for autoimmune gastritis (pernicious anemia) which could be causing my gut to not absorb b12 properly, but mentioned that this test is not always accurate in diagnosing
*Ferritin is on the lower end of normal and could be improved. Mentioned increasing dietary iron intake paired with high vitamin C sources.
*Thyroid peroxidase antibodies are elevated (however my thyroidglobulin levels seem normal - does this rule out Hashimotos?) Last 3 results for TPO antibodies were 180 last summer, 61 late last year, and now 265?!
*My thyroid hormones are all now out of range and suggested that my levothyroxine dose may be too high. Looking at these results… I’m inclined to agree!
How I’m actually feeling? I’m not too sure. I just had a huge panic attack on receiving these results as was not what I was expecting. The initial itch that started this whole journey is now much better. I do feel less low but anxiety is still pretty bad. I’ve definitely dropped a few pounds, which I wanted to do, and still a healthy BMI. I don’t feel quite myself, that’s the best way to describe it. My mood seems unpredictable. I was on HRT but decided to come off about a month ago as I didn’t feel any different on it. I feel like I’m on the right journey to finding better health for myself, but may have taken an incorrect path. I’m scared to take my full 50mcg dose of Levothyroxine tomorrow and not sure what step to take next 🫣
I appreciate you taking the time to read my post, and any suggestions or advice you could offer me at this time. Thank you so much for your continued support ❤️
The actual results: (post 2 months on 50mcg Levothyroxine)
You're having a Hashi's 'hyper' swing. Nothing to be scared of.
Right now your immune system is attacking your thyroid and the dying cells are leaking their stock of thyroid hormone into the blood causing your FT4/3 to rise sharply.
And thyroid peroxidase is also leaking into the blood which is why your antibodies have risen as they come along to supervise its removal.
But all this is only temporary. The excess hormone will be used up/excreted and levels will go down again by themselves.
The best thing to do is to not take your levo tomorrow; or at all until you feel hypo again.
And best not to involve your doctor because s/he won't understand what's happening and will freak out on seeing those levels. Just keep your head, listen to your body and deal with it yourself. You can do it!
Thank you greygoose … your reply definitely helps my anxiety levels right now. I’m going to stay off levothyroxine for the next week or so and then (if feeling less hyper more hypo) will start back on 25mcg, and will test again in about 2 months. Following SlowDragon ’s and the other lovely people on this forums advice… I’m going to work on my vitamin b12 levels in the interim. If b12 is still deficient/low in 8 weeks time then I will advocate with my GP to be tested for pernicious anaemia. If I fail I will just do it privately.
This journey is overwhelming and complicated. Looks like I can’t just find a sweet spot on my medication and be okay as these ‘swings’ could happen at any time to wreak havoc. Is there anything I could do to help limit these attacks? I am trying to be as gluten light as possible when it comes to my diet, but at this point am prepared to do anything to find greater stability with my health. All these ups and downs I’m finding tricky to navigate.
Thank you all who responded to my post with words of advice and support. I appreciate each and every one of you! ❤️
I'm afraid there's nothing you can do to limit the attacks, the disease has to take its course. And whilst gluten-free might help with some symptoms, it's not going to have any effect on the attacks - although it would have to be 100% gluten-free to have any effect, not just 'gluten-light'.
It is tricky to navigate, that's a given. One just has to do the best one can. Eventually, as more and more of the thyroid is destroyed, the attacks will become less frequent and less severe. But until then we just have to try and take them in our stride.
I’m just curious… at what point do people with Hashimoto’s consider a thyroidectomy? If this could be happening over and over for many years to come and result in my thyroid being completely destroyed anyways, then wouldn’t it be better to just remove it now so I can at least find my proper dosage of thyroid replacement and avoid all this unpleasantness?
I don't think Hashi's people ever consider a thyroidectomy. Not something I would have contemplated, anyway. You hang on to that gland for as long as possible.
Pretty certain I had my last 'hyper' swing when I was 50 (I'm not 79). When I was 68 I was very ill (nothing to do with thyroid) and stopped my thyroid hormone for six months. When I finally got a blood test, my TSH was about 45, but my presumed-dead thyroid had been able to produce enough T3 to keep me alive. If I'd had it removed, I would have lost that back-up and I would have been dead. That's why you hang onto your thyroid for as long as possible, to see you through extreme circumstances like that.
Awwww thank you for sharing your story. I’m 47 and hoping the flares are nearer to the end. This is all new for me. I’ve struggled so much over the past few decades with many symptoms like depression, anxiety and I’ve also been learning that hearing could also be affected by thyroid issues and I’m now at the point where I’m borderline candidate for a cochlear implant. Tinnitus is so bad at the moment which seems to be a symptom of a flare also.
I’m really glad you were able to come through what you have done. I hope one day I can be as helpful to others struggling with thyroid issues as much as you have been kind and helpful to me. ❤️
SlowDragon do you have any research linking b12 to Tinnitus. My adult son has it....now deaf in one ear. He is vegetarian and resists taking b12 supplements. Now moved to Veganism.
Lower serum levels of vitamin B12 have been associated with slight to mild hearing loss, while cochlear dysfunction and poorer hearing thresholds have also been observed in individuals with vitamin B12 deficiency.
The researchers found that 47% of people with noise-induced hearing loss and tinnitus had vitamin B12 deficiency. In comparison, fewer people with noise-induced hearing loss (27%) or no hearing loss or tinnitus (19%) had vitamin B12 deficiency.
Group A, with 20 patients, received 1 ml of Vitamin B12 (2500 mcg) injections weekly for six weeks, while Group B, also with 20 patients, received placebo saline injections.
The study found that 42.5% of participants had Vitamin B12 deficiency. Notably, after the Vitamin B12 supplementation, patients in Group A with this deficiency showed improved scores on the Tinnitus Severity Index, indicating a reduction in tinnitus symptoms. However, there was no improvement in patients without a Vitamin B12 deficiency or in Group B who received the placebo.
This pilot study suggests that Vitamin B12 might be effective in treating chronic tinnitus in patients with a deficiency,
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency.
Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Thankyou. I will send him this but he is 38yrs old.....& stubborn.....won't listen. He suffers with depression....I swear his b12 is insufficient but he wont test and wont listen....I have tried. Even bought him supplements!! 🤣😂Now a vegan.....I fear it will get worse.
I eat less meat than I used. I like vegetarian meals but it's all about balance. I'm obviously getting too lo g in the tooth! 🤣😂Sorry about your friends....
What they dont get is that they could end up with permenant harm if they leave it too long. Lol
Oh, that's not the half of it! lol The full story is on my profile, if you're interested.
Loss of hearing can be a hypo symptom, yes. My hearing is very bad, now. But tinnitus can be due to a lot of things. I don't think it's specifically due to a 'hyper' swing. More likely due to being hypo.
Wow I just read your story on your profile! What a long journey you have been on. I’m so glad you didn’t give up and are hear to tell the tale today, and to inspire others that they can feel better than they do currently, even if that isn’t near perfect.
I’m on day two of no levothyroxine, and already starting to feel a bit hypo. I’ve been crying a lot today, but I received some bad news on the sale of my house, which I am selling to relieve the financial strain because I’m feeling so up and down as I navigate what’s been happening with my thyroid health. Do you think I should stay off the levo for a few more days to reset or start back on half a pill (25mcg) tomorrow morning?
I’m already scared at what’s going to happen in June when my GP does my review and runs blood tests. If I’m having another Hashi’s hyper swing and my TSH and T4/T3 are what they were just last week then they are going to take me off my medication immediately
Thank you again for sharing you story and some hope greygoose ❤️
Such a shame about you house. It's always very stressful selling houses, isn't it. I've done it a few times. And it's come just at the wrong time because it makes it difficult for you to concentrate on what your body is telling you.
Your Frees were very, very high, they're not going to come down over-night, it's going to take at least a couple of weeks. So, if I were you, I would not take any levo tomorrow. Give it time.
On the other hand, June is quite a long way off. Your levels should be much lower by then. And the chances of you having another swing between then and now are pretty slim. But, if I were you, I'd get a private test before seeing the doctor for your review, so that you know what's going on, and if necessary, push your appointment forward for as long as is necessary - cancel as many dates as you need, after all, they don't hesitate to do that to us!
I will give it a few weeks then and will closely monitor how I’m feeling. I’m pretty exhausted and low today, but could be due to the bad news and upset it caused me today, rather than feeling hypo.
It’s been a full week not being on my levothyroxine. I’ve had this nagging thought in my mind during this time. With Hashimoto’s my thyroid levels are very up and down. On just 50mcg of levothyroxine my free t’s jumped to very very high levels while having my hashis hyper swing. I’m assuming if I was not taking levothyroxine then they would have gone higher, but not as high as they did. It makes me scared to start taking levothyroxine again to be honest. It was a truly horrible experience and now I’m scared. Do some people with Hashimoto’s just wait until these swings are a thing of the past before going on thyroid replacement? And put up with their hypo symptoms as best they can?
Also wondering if my blood testing hadn’t happened during my hyper swing? I wouldn’t have known how high my free ts were and would have kept taking my levothyroxine… could that have been dangerous?
On a sad note, since discontinuing my levothyroxine I’ve been feeling that familiar itch again Not as intense but it’s there. It only decreased and disappeared on levothyroxine.
Sorry to be hounding you with more questions. I’m just feeling really lost.
I’m assuming if I was not taking levothyroxine then they would have gone higher, but not as high as they did.
Why would you assume that? Quite the opposite, I would have thought.
Do some people with Hashimoto’s just wait until these swings are a thing of the past before going on thyroid replacement?
Not that I know of, no. And I think that would be very ill advised. Your body needs thyroid hormone too function and low levels can have negative effects on organs like the heart.
Also wondering if my blood testing hadn’t happened during my hyper swing? I wouldn’t have known how high my free ts were and would have kept taking my levothyroxine… could that have been dangerous?
Me: I’m assuming if I was not taking levothyroxine then they would have gone higher, but not as high as they did.
You: Why would you assume that? Quite the opposite, I would have thought.
I assume that because levothyroxine I thought was basically increasing my t4. Meaning if I wasn’t taking levothyroxine I would assume it wouldn’t have shot to the very high twenties, as it wouldn’t have had the t4 top up from my levothyroxine involved also. It makes sense in my brain in this moment…
Are you saying without my 50mcg levothyroxine dose my free ts would have gone even higher? And if that’s the case and the levothyroxine has the opposite effect then why were all people on the forum advising me to come off my meds for a bit?
Levo doesn't top up your levels, it replaces the thyroid's production by reducing the TSH. The thyroid cannot produce thyroid hormone without the stimulation of the TSH - Thyroid Stimulating Hormone.
But, the T3 and/or T4 that rushes into your blood when your thyroid is attacked has nothing to do with your thyroid's daily output. It is hormone that has been made, but not released, and stored in the cells in your thyroid. When the thyroid is attacked, these cells are killed off, and as they die, they release their stock of thyroid hormone - T4 and/or T3 - into the blood. So, levels rise.
Therefore, yes, taking levo at the same time did make the levels higher, which is why the first thing to do is to stop taking levo.
I'm not sure if that's clear - wish I had a blackboard and some chalk! lol But if it's not clear, let me know.
Thank you greygoose for taking the time to explain to me. I’m really new to all this and appreciate your wealth of experience ❤️ and time taken to share this.
I have been feeling very low since I stopped my levothyroxine and am entertaining cutting my pills into quarters and starting on 12.5mcg for a week or so and then if okay up to 25mcg for a while. Feeling the itch creeping back is something I cannot tolerate after it stole half a year of my life last year and almost sent me to the loony bin. And feeling low is not how I felt when I was super hyper 1.5 weeks ago when I had those blood tests done. At that time my heart was racing and I felt very anxious. I was also perspiring like I never have before. All this seems to have stopped now and I feel so flat and very sad.
Do you think it would be unwise to introduce a very low dose of levothyroxine right now? I can’t stand feeling this low 😢
I’m also taking daily b12 after breakfast as per SlowDragon ’s advice and am going to add b complex next week as my b12 levels are very deficient.
Pretty much what Greygoose said above. Thyroid disease can have these unpredictable swings, they do pass. Your antibodies can go up and down like this whilst your thyroid is under attack. If you go to your doctor with those results they'll pull your Levothyroxine which isn't what you want. Just stop having it for awhile, keep a tab on your symptoms.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
The report said I could have a full blood count to check for autoimmune gastritis (pernicious anemia) which could be causing my gut to not absorb b12 properly, but mentioned that this test is not always accurate in diagnosing
The correct test would be an Intrinsic Factor antibodies (IFab) test. A Full Blood Count would tell you about Mean Cell Volume, Red cell Distribution Width, etc., which are good to know but do not, cannot, show autoimmune gastritis.
Unfortunately, IFab is notorious for false negatives. You can have multiple negative tests before getting a positive test. Negative results effectively mean nothing. But a single positive test proves the issue.
It is also useful to test methylmalonic acid and homocysteine which clarify the effects of being low in B12.
I urge you to join the Pernicious Anaemia Society forum and post there.
We would not normally advise increasing from 25- 50mcg Levo two months ago and stopping HRT around the same time- far better to make one adjustment at once.
When taking HRT members often report needing slightly more Levothyroxine and consequently when stopping HRT, they may need slightly less.
As others have said, I would stop Levo completely for a few days until adverse symptoms have passed and then restart at a lower level. When restarting, I would return to the lower level of 25mcg Levo and retest TSH/ FT3/ FT4 after 6-8 weeks. If further adjustments are needed following this, I would do this slowly. I’ve found using a pill cutter and adding just 12.5mcg Levo to my daily dose beneficial. Going slowly means you are less likely to miss your ‘sweet spot’ where you feel most well.
On my own thyroid journey, I’ve experienced the ‘swings’ in levels, as described by greygoose , so please don’t panic unduly about this; your levels will settle.
I’ve managed to improve my health massively, by following advice from SlowDragon to improve key vitamins, so definitely work on these going forward.
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