Hi, hoping someone can explain thyroid panel ranges. We’ve use Medichecks a couple of times but my husband’s TSH and T4 levels are now being closely monitored by the GP as he’s just started levothyroxine. I’m really confused as the ranges are so different and the NHS isn’t checking his T3 so I wanted the Medichecks to compare. His T4 shows as upper normal on NHS ranges but mid range on Medichecks.
TPO antibodies are also above range but different on Medichecks.
He’s got very severe hypothyroid symptoms (and potentially Hashimoto’s encephalopathy which is being investigated but they need to see his response to levothyroxine too) and he’s been misdiagnosed repeatedly so I really need to understand what’s going on with his results. He technically classifies as sub clinical hypothyroidism so we can’t understand why his symptoms are so severe, especially memory and cognitive issues.
Why are the ranges so different? Any advice appreciated
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Zmalp
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thyroid.dopiaza.org/Zmalp, the ranges are created according to the equipment used in the testing lab and statistics from local population. This is why the vary lab to lab or NHS to private company.
So we can compare results which use different ranges we look at percentage through the range. The calculater is linked above . So if you are comparing results even though the number is different the percentage through range should be similar
He has TPO antibodies consistently above range and normal levels of TG. TRAb is now being tested but results not back yet - that was requested by his GP.
He was deficient in Vit D in Feb and borderline for folate in September so he has got a supplement regime but again not sure what’s optimal. He has an excellent diet and is diagnosed with non-coeliac gluten sensitivity so gluten free for over 2 years. Gluten makes him very ill. Dairy doesn’t seem to affect him.
He’s been on 25mg of levothyroxine for 4 weeks and there has been a slow, mild improvement in symptoms. Current instructions to the GP are to titrate up every 6 weeks until his TSH is below 3. GP is referring back to endocrinology because of the memory issues in case it’s encephalopathy. He suffers auditory hallucinations in a flare-up but they have greatly reduced since he started levo, though he has tinnitus and sensitivity and pain from noise.
Supplements are a basic multivitamin plus:
2000 IU D3
25mg zinc piccolinate
500mg vit C
20mg B1
20mg B2
50mg B3
40mg B5
10mg B6
200ug B7
200ug folate
150ug B12
The B vits are bioavailable versions such as methylcobalamine, P5P etc in a complex
There doesn’t seem to be a brand on the levothyroxine. His B12 and ferritin are middle of normal Medichecks range but D is in bottom third even after months of supplements.
I’m checking with the calculators now- thank you 🙏
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
He’s 99kg and 6’4” so I expect he’ll need to be titrated up much more than this starting dose. Just been told to take it to 50mg now.
It’s definitely had some positive effect so far. I just hope we see some improvement in memory, no matter how small, as I think that will give us hope. He knows it’s going to be months to get this right.
From what I’ve been told today, the endo is going for exactly what you’ve said above re TSH and FT4 but is advising the GP by email instead of seeing us as the waiting lists are so long.
At the base of this, the manufacturers of tests/analysers have not been forced to achieve harmonisation. In my view, this is a major issue and clinicians should be jumping up and down. Labs should be demanding this.
Where tests simply have ranges (intervals) that are shifted up or down, or stretched a bit, we can address that by using one of the calculators to give percentage through range. Theoretically, a test that shows 50% on one, will be show 50% though another.
However, you are right. Results can be inconsistent beyond this.
One possibility is interference - where some factor causes results to be high or low.
Another is time of blood draw. All thyroid tests can show different results by time of day. Both because our levels naturally vary. And also the time relative to taking thyroid hormone.
Also, although we see that postal tests are often very, very similar to those done at NHS labs, sometimes they seem not to be as consistent.
Thanks and good point on the timing as the NHS took the last one at 7pm, whereas we always get the Medichecks done at 9am. The main reason was to get the TPO and TRAb done but that might explain the T4 result being different 👍
I really feel he’s been let down badly. This has been going on for 4 years, and is a litany of failing to test and mistakes and phone appointment diagnosis because of Covid.
He has TPO antibodies (discovered by me after I issued a SAR to the hospital on the advice of a psychologist who told me he’d been misdiagnosed - they said his TPO was normal but in fact had not tested), his TSH is elevated but under 10; MRIs are normal. He has classic hypothyroid physical symptoms but also these cognitive and memory losses during the winter which seems to be triggered by viruses. When it first began, physical symptoms were more hyper but switched to hypo 2 years ago.
They have just tested his testosterone which is normal so now waiting for endocrinology to respond to the GP re the HE and next steps. I’ve got a phone appointment for an update with her tomorrow. Memory has deteriorated again since September. I just wish they’d hurry up and try steroids before it gets any worse. The acute medical unit consultant thinks it is all due to his thyroid so left the GP to refer on. She’s not convinced (neither am I but I really hope we’re wrong) because the neurological symptoms are so pronounced so wants it reviewed urgently.
so helpful - thank you. Vit D is just over 80 after months of supplements so we need to watch that carefully during winter as he’s been outdoors a lot over the summer and that result is from mid September
Folate is borderline deficient so working on that now. I suspect he can’t easily convert B6 either so supplementing with P5P.
4000IU for 3 months then 2000IU, because that was the Medichecks recommendation on his first thyroid panel. But now I think it’s more likely he will be underdosed than over, especially as he always has difficulty with symptoms in winter.
I will get magnesium going too - just wasn’t sure about that 👍
Personally (with Hashimoto’s and gluten intolerance) I have settled on 4000iu daily in summer, plus plenty of sunshine…….higher in winter…..5000-6000iu. Testing twice year (ideally January and August) …..this keeps my levels at 100-125nmol
It took 4-6 months at 6000iu daily to increase vitamin D up from low levels
Everyone is different on how much each person needs
Vitamin D mouth spray is often better absorbed than tablets
Free B12 is 134, and he’s on supplements. The psychologist he had to see last year re memory loss was convinced that what she was seeing was a metabolic or deficiency issue and especially wanted me to check his B12. It has been lower but not out of range.
It’s a similar memory loss according to her, but she thought his thyroid was ok at that point because the hospital misreported.
Thanks 😊 It’s definitely a result we have to keep an eye on
I am so sorry. How awful for you both. Just wanted to tell you that although his b12 numbers are fine, one can have functional b12 deficiency (when levels are fine but there is still an uptake issue). Why don't you come over to the PAS (Pernicious Anemia Society) section of HealthUnlocked and ask some questions. My b12 deficiency was found by a low serum number, so I am afraid I don't know the ins and outs about that other manifestation..
However, I asked the question because I had a ton of cognitive issues before my b12 deficiency was found - memory, word funding, stopping in the middle of sentences and not remembering what my point was, inability to edit in written form, a delusional experience /hallucination (I was riding my bike in a park around a lake and I honestly thought the lake was calling me. It was the only time but I stopped the bike it was so scary and real),, slurring of words at times, thinking I was saying one word and another came out of my mouth. I had just been caregiving for both of my parents with brain cancer and the other with dementia that I thought maybe it was just stress.
But practically everything disappeared with b12 loading doses (intramuscular injections). That quickly.
I do not want to give you false hope but maybe the doctor could agree to a trial of b12 shots just to see if there is improvement.
Do know that medical professionals are not educated in this area (so good on the psychologist for noting that it seemed like a deficiency so that you can at least cross things off). They just did not have the training. My own GP still thinks Pernicious Anemia/b12 deficiency is just about fatigue. I had over thirty symptoms. Eighty per cent of them just went away after years of issues during the loading period.
The folate needs to be properly monitored as symptoms can manifest with that deficiency as well.
I also was severely deficient in Vitamin D during this same period, so keep on that as well.
When I have a moment I will PM you some of my symptoms. Do PM me if I forget. My TSH is 32 right now so I am off my game and somewhat distracted, so don't hesitate to PM and remind me.
Here are some informative links in the meantime, including some to offset the erroneous nonsense that can come from doctors. I have no glasses on so hopefully you can read through my typos.
Although this is just me scribbling then out at the time, they are all documented b12 deficiency symptoms (do not expect doctors to know that). As I said I had many of them for years and eighty per cent went away as early as the initial period of loading doses.
He’s definitely low in folate so this is entirely possible. I’ll drop over to that forum and find out more.
His memory loss is an unusual pattern. It presented initially as amnesia but in a winter flare up, he registers as mild cognitive decline too. It gets worse every year but has long periods during summer when it stays the same. He can do all kinds of practical things without any apparent difficulty but currently he can’t remember his date of birth, which wasn’t an issue at all before this September when his usual flare up started. He’d had to stop taking vitamins for a routine Medichecks test but then failed to get the blood sample 3 times so had to get it drawn. With that delay and the postal strikes, he ended up being without vitamins for 3 weeks, got a cold or possibly mild Covid and then deteriorated really fast. He got sent into the acute medical unit as he was really out of it at the GP appointment at the very end of November in case it was encephalopathy, but the consultant there was convinced it’s autoimmune thyroiditis and he’s hypo and that’s responsible for his mental state and physical symptoms (which do seem pretty classic.)
What baffles me is how someone can be subclinical but this ill. His TSH is 6.6 but other people report way worse results and don’t have memory issues this severe.
Symptoms are:
Fatigue and exhaustion
Aching
Slight hair loss
Psoriasis also flares in winter
Labile mood in winter
Cold, often icy to touch, and body temperature drops and confusion gets correspondingly worse
Amnesia and poor general memory
Cognitive confusion in winter which gets worse with fatigue
Tinnitus, and external sounds sometimes sound as if they are inside his head, especially with fatigue (these are new since Sept)
Auditory hallucinations in a winter flare - basically his own thoughts but they sound like an audible voice in his head; normal thoughts but worse if he’s upset (been improving since starting levo)
Headache and dizziness especially if bending over or tired
Low mood is generally only when exhausted and aching everywhere
He generally deteriorates mid September and picks up after Christmas. He improves with rest too.
He is still in work but has had to completely change his job due to the memory issues - it was just too stressful trying to carry on in a professional career with that level of memory issue and feeling like he’s been run over by a truck for months on end. He’s not a man who has ever enjoyed sitting around and used to be very active and driven 🤷♀️
I will keep you both in my thoughts & pray for some insight to come your way. Do not wonder why some don't have this or that with any thyroid issue. Everything truly plays out differently for people. I have been on the PAS section for a couple of years and there are many people without many cognitive issues at all & some of us who had a ton. So don't let that throw you off.
Here's to someone figuring it all out & getting him the necessary treatment. All the best to you both.
Hi. Men are far less likely to have thyroid problems (probably why it's poorly treated but that's for another time). I'm a man and thought I'd add my 2p.
Please put the results into the calculator I wrote (thyroid.chingkerrs.online) and then post the summary here - the percentages will help the experts here (not me!). Post just the results from the early morning test, as results vary during the day due to the circadian rhythm. I always book in for 9am.
Vitamin D. I take 8000IU per day. Plenty of evidence that higher values like this are fine, though somebody at church told me off for suggesting that - please do your own research. It is *important* to take Vitamin K2 as well, otherwise calcium will go into hardening the arteries, not the bones where you want it. You can buy a convenient and tasty spray that delivers both at once and can be taken at any time of day.
Testosterone. I looked into this as T is crucial to is men, to explain my low mood, brain fog, low energy. and my levels were on the low side of NHS normal range. I approached a TRT company (mojo clinic) and had a very good conversation. We agreed to wait unto my next comprehensive blood tests before taking TRT further as I'm titrating my thyroid meds. They CAN treat me with my levels, but 1) TRT is hard to stop as the body stops natural T production, 2) TRT is lifelong and therefore expensive going private. The NHS only treat at much lower levels and with inferior protocol (1 shot per month rather than more frequently).
The people on here will give you excellent advice, but there will be a deluge of advice. The very best of luck - we really do need to take personal control of our health.
Get him to join the mojo clinic Facebook group. It's pretty sane, not testosterone fuelled nonsense. They can interpret his results with an independent eye (they're not, however, as wise as the people here). Then have a chat (free and good) with one of the guys at the clinic. It just might be a help.
Do get him to take vitamin K2 as well as vitamin D, otherwise calcium will be directed to his arteries not his bones.
Thanks everyone. I’ll post the other results etc asap - just got in from working late and shattered.
Spoke to the GP and the endocrinologist has instructed a free testosterone test now and said he wants TSH down to 1 and T4 up to 14 so they’ve increased the levo to 50mg and will continue to titrate.
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