Thyroid UK
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12 years hypothyroid with no issues until now

Hi everyone ! I’ve been hypothyroid for 12 years and have always been very stable on levothyroxine.... until now. Two years ago I started having head pressure, headaches and dizziness and kept going back and forth to GP. GP checked my thyroid function at the time and said that is not the problem and said it must be sinuses. Fast forward to Christmas 2017 and I was also having trouble sleeping ( wired through the night) , shaking hands, etc.. doctor rechecked my thyroid function and found my tsh to be 0.02 !!!! His knee jerk response was to immediately lower my levothyroxine from 175 mcg per day to 150 mcg. He retested 8 weeks later and my tsh was 0.2. He immediately lowered levothyroxine to 125 mcg. I asked him if he could check my free T3/T4 and he agreed but scheduled test for 10th April. Meanwhile I ordered my own test through medichecks and these were my results::

Tsh 0.2

Free T4 21.3 (12-22.00)

Total T4 117.0. (59.00-154.00)

Free T3 3.8 (3.10-6.80)

Thyroglobulin antibody 31.4 (0.00-115.0)

Thyroid peroxidase antibodies 16.4 (0.00-34.0)

Active B12 90.5 (25.10-165.00)

Folate 2.94 (2.91-50.00)

CRP- high sensitivity 2.5 (0.00-5.00)

Ferritin 22.3 ( 13.00-150.00)

Okay ... my tsh still low.. my T4 high despite two unprecedented reductions in levothyroxine ( I’ve never needed a decrease in 12 years only ever had occasional increases) and my T3 looks lowish to me. Because I’ve been referred to endocrinologist for my previous/continuing issues with high bp spikes, head pressure and dizziness (whom I’m to see for first time on 19th April).. I’m wondering if this drastic sudden change in my thyroid status could be caused by some other issue in the endocrine system ? I find the combination of low tsh, high normal T4 and low T3 to be perplexing . Any advice welcome ! 😋

15 Replies
oldestnewest

Meant to say thyroid perixidase antibodies were 164 !!! Not 16.4

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That's good to hear! My first comment was going to be that you need to find out why you're hypothyroid!

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Your Ferritin is far too low. Low Ferritin can suggest iron deficiency anaemia so it would be worth asking your GP to do an iron panel and full blood count. Ferritin needs to be at least 70 for thyroid hormone to work. Start eating liver regularly, maximum 200g per week, as that will help raise your Ferritin level.

Your Folate is also low, bordering on deficiency. Ask GP if he will prescribe folic acid. If not then supplement with a good B Complex containing 400mcg methylfolate eg Thorne Basic B. Folate should be at least half way through range.

Did you not have Vit D tested? That is also important.

Your FT3 is very low in range, it should be in balance with FT4. If optimising vitamins and minerals doesn't improve conversion you may benefit from the addition of T3.

Your high TPO antibodies confirm autoimmune thyroid disease aka Hashimoto's which is where the antibodies attack the thyroid and gradually destroy it. You can help reduce the antibodies by adopting a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily.

chriskresser.com/the-gluten...

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

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Thank you for the advice ! I suspected Hashimoto’s but I did wonder if same autoimmunity that is attacking my thyroid could be also an autoimmune response attacking me elsewhere along the adrenal pituitary axis that could have started my odd original symptoms and led to low tsh and low T3 despite previously being on an appropriate levothyroxine dose. Obviously endocrinologist will have answers or will search for them 😀

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Obviously endocrinologist will have answers or will search for them

I take it you were being ironic, there. lol

No, your Hashi's antibodies won't be attacking anything else. Just the thyroid. But, Hashi's people often have bad conversion. That's just the way it is, and I'm not sure there's anything you can do about that.

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It looks as if there is a T4-T3 conversion issue here. Your FT4/FT3 ratio is 5.6/1 which is a clear indication that your body cells are not capable of giving you sufficient FT3 to operate properly. A TSH of 0.2 is nothing to worry about when on thyroid hormone therapy and only in cases of untreated people where hyperthyroidism might be suspected -not applicable to you. So the evidence points to a reduction in conversion efficiency which may mean adding T3 to the dosage of T4 to get round that. But get everything else right first and retest to see if this has returned conversion to more normal efficiency.

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Thank you for that information .. what should ratio be between T3/T4 ?

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Thank you for that insight. When my tsh was 0.02 I was up all night and jittery. Now with tsh at 0.2 I’m cold, tired, dry skin etc .. so I’m not sure GP’s reduction of levothyroxine is helping on one hand . What I can’t figure out is why I’ve had 12 years of absolutely no issues and for problems to develop now when I’m having other endocrine issues. My mum had cushing’s syndrome at my same age and two of my uncles had Conn’s disease ( adrenal tumours). I was originally referred to endocrinologist for those issues and while waiting for first endo appointment I’ve developed thyroid disturbances . My thyroid gland has been aching off and on as well which is new

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Your TSH doesn't make you feel anything. It's not the TSH that causes symptoms when it's high or low, it's the T3. And your FT3 is very low.

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More like 4/1 to (tops) 4.5/1. It would be 3/1-4/1 in health, but on treatment with T4 perhaps 4/1 is a good target.

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Essential to test vitamin D

Vitamindtest.org.uk £28

Extremely common to be too low with Hashimoto's. Plus it's often linked to insomnia and this is lowest time of year for vitamin D

drgominak.com/sleep/vitamin...

hypothyroidmom.com/92-of-ha...

Taking a good vitamin B complex with folate in would help your very low folate

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

You probably now either need to put dose Levo back up or get endo to prescribe addition of small dose of T3, as FT3 now far too low

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Thank you I will get vit D checked as well as follow up on other supplements . I’ve also read here today on several posts that I shouldn'ttake my levothyroxine on the morning I have a blood test . I’ve always taken normal dose on morning of test .. does this skew results as well ?

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It skews the FT4 level. Well, that is to say, all you're testing is the dose you've just taken, not normal levels of circulating hormone. In other words, a false high FT4.

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Yes, it does skew the results. Shortly after you take your tablet there will be a spike in your blood lasting a few hours.

So it's likely your true freeT4 is quite a bit lower than it shows up in your results.

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Something similar happened to a friend of mine. He had been stable for years, but at some point had a few sharp decreases and spent a long time trying to get back to where he was.

I get the impression from the forum that its quite common to do well on Levothyroxine for years, but then quite suddenly start to struggle with it.

Perhaps something to do with age, either making us poorer converters, or making us less able to cover for having a low T3.

Ideally you need some T3, and good supplementation for your low vitamins. But this is a time to be very careful with doctors, and double check everything they do. They often hand out crap supplements, that just don't raise people's levels. And there has been a recent crack down on prescribing T3, so you may not be able to get access to it.

Go in prepared to buy your own supplements, follow SeasideSusie's advice as she is the best with it, and start preparing yourself to buy your own T3 down the line if it turns out you won't be given it.

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