Wonky labs

[phirestar]

I’m still waiting for full thyroid panel results but from April to November my tsh went from 2.56 to 57! I still seem to be asymptotic at this level. I had the best lipid panel I’ve ever had - all in range. I went through several months of extreme stress and anxiety. Is it possible that that extreme stress and anxiety might do this?thx

[MAMAILLET]

Going through a similar challange myself currently. What was and is your current medication look like?

[phirestar in reply to MAMAILLET]

I’m in the USA. Im on a compounded t4 in an olive oil suspension - been on 88 mcg.

[MAMAILLET in reply to phirestar]

How do you find the liquid compound?

I am in Canada but taking Tirosint which I purchased from a us pharmacy. I am thinking of moving to liquid compound. I have been suppressed below 1 for 6 years. I started 8 months ago at .125 and managed to get down to .88 and was still suppressed below 1. My TSH went from below 1 to 10. I increased my dose from .88 to .125 but my TSH continues to climb (labs run today and now 12).

I am interested to learn more about others experience with stress and thyroid conversion or lack there of.

[phirestar in reply to MAMAILLET]

I had bad reactions to mylan levo and synthroid. Was put on Tirosint but when I switched Medicare plans (68), couldn’t afford it any longer -$90/28 caps. We have compounding pharmacies here and I called around. I don’t know if they can ship to Canada.

Our medical system is really messed up. Where I live, I can’t see a specialist without a referral from my primary and only a specialist can refer to another when outside of the network. I didn’t know any of that until recently. In March I had a positive DRVVT and negative PPTla - indicating anti phospholipid syndrome. I was refused by aRhuematoligists bc I feel fine and it’s a blood disorder (autoimmune). The first Hemetoligist didn’t have a clue about lab testing protocols nor did he have my labs. It takes about 1-2 weeks for the referrals to be processed and 4-6 weeks to get an appointment. I’ve never been refused by a doc in my life. This sent me into a tailspin and by June I told my pcp I’ve never been so stressed out bc this is the first time in my life where there were no decisions that I could make - much less see a specialist. By June I sprouted a lovely purplish rash on the sides of my face. Biopsy results are discoid lupus. Systemic lupus has been ruled out (labs and no symptoms). The second Hemetoligist has referred me to UCSF. I saw the Rhuematoligist and he says he agrees w the referral. Both DLE and APS are highly unusual at my age especially w no prior history. My pcp agrees that I’m a total outlier. I thought my tsh might increase a bit as that’s been my pattern but never did I imagine that it would go to 57! I haven’t heard from my pcp but I suspect that she’s waiting for the rest of the results. I had just seen her prior to this lab so she’s aware that I’m maintaining my asymptomatic status. My big surprise was in my lipid panel which was the best that I’ve had all below range and my B pattern has gone to an A (preferred). This kinda tosses the link of cholesterol and thyroid out the window. I guess extreme stress might also affect your heart. The Rhuematoligist heard some abnormal sounds and I then had 2 ecg’s an echo, and ultrasound and stress test. Initially it was showing abnormal t waves (maybe a silent heart attack) but these normalized w the stress test. The cardiologist says that my heart is in excellent shape. The timeline for the huge stress fits everything that’s transpired so far. So I posted this to see if anyone might have some insight into tsh at 57 from 2.56 and still being asymptomatic. I’ve thought my asymptomatic status was due to an optimal ft3 but I don’t have that test yet to see where it’s at. My ft4 dropped a good bit. I’ve not had any conversion issues. I’m a complete puzzle w wonky labs.

[Angel_of_the_North in reply to phirestar]

Can't you just pay to see whoever you want?

[phirestar in reply to Angel_of_the_North]

Our system is driven by networks that are contracted by the insurance plan down to region/zip code. I’m on Medicare and Medicare plans vary greatly. In my area there are no PPO plans (allow broader access) - I’m limited to HMO, Kaiser or original Medicare. W original Medicare a wrap around plan is needed plus some other add ons. My premiums for this would be $400(apx). There are no specialists that I can see without a referral.

[Angel_of_the_North in reply to phirestar]

Surely there must be people you can see if you pay for it yourself without involving insurance - what about all the US functional doctors who advertise on the Internet? Even in the UK there are places you can go if you pay.

[phirestar in reply to Angel_of_the_North]

Functional docs are MD’s which are like regular MD’s (some certified some not). They are not specialists like Rhuematoligist or Hemetoligist who specialize in certain areas. I’m such an odd duck, I’ve been referred to UCSF in SF. My pcp is very good and I’ve known for some time that I’m a complete outlier. I’m pretty far outside the bell curve for what would be considered ‘protocol ‘ treatment.

[Hidden]

"my tsh went from 2.56 to 57! I still seem to be asymptotic at this level.".

You still feel OK with a TSH of 57???

Wondering if they missed a decimal point and it should be 5.7??? That's high but not excessive. I still didn't feel well when it was just under 3

[DawnieA in reply to Hidden]

MyTSH was recently 362, when reporting it to my consultant, he asked if there was a decimal point missing, but there wasn’t. It came down to 156 and now it’s 52. Consultant has no idea what’s going on 😢

[helvella Administrator Thyroid UK in reply to DawnieA]

Should be checking for interference with the assay. For example, anti-TSH antibodies.

[DawnieA in reply to helvella]

I did have assay interference with one lab so have my bloods done at A different lab now

[LAHs in reply to Hidden]

That's just what I was thinking. I would get another measurement - maybe it could be free if you suggest that result is ridiculous. You could supplement your current plan with some private blood tests from "True Health Labs (THLs)" a complete thyroid panel costs a little less than $300 but it tells you absolutely everything about your thyroid condition and probably a lot more than that $400 (per month?) wrap around plan. THLs can be found on the Internet, they operate out of Georgia, you pay them, they send you a Purchase Order which you take to any of their sub-contracted draw labs (and there are many, Quest is just one of them). For what it is worth I use THLs about once a year just to monitor things mostly because the docs only do TSH and T4 and then try to adjust your dosage.

[phirestar in reply to LAHs]

FYI: I can get a full thyroid panel from blt labs for about $90 plus draw. They use lab Corp. My labs don’t cost me anything. Done at quest.

[LAHs in reply to phirestar]

Well, OK but wherever you are getting it I would ask them to double check the decimal point, it means a lot.

[TSH110]

Perhaps you had a dump of thyroxine as part of your thyroid was attacked by antibodies and died offloading it’s hormones - it is quite a jump nevertheless. I had several of these blips for a short time I would become hyperactive running 10 miles fast with no effort whatsoever, becoming belligerent and unempathetic then revert to feeling cold, lethargic and depressed. Just a thought. But 57 is very overt and perhaps the end of the road for your thyroid is fast approaching. This vacillation could cause high anxiety and stress, not the other way around. 88mcg is unlikely to be adequate replacement hormone if this is the case. 125mcg to 200mcg is around the total replacement mark for those that have no or indiscernible thyroid function. You should have another blood test to determine what is going on. Mine was done only a few weeks after a hyper reading and results had shot into severe hypo in this short time. A few more weeks in that state and I would have pegged it I got medication just in the nick of time. At least you are on medication already.

[phirestar in reply to TSH110]

I thought that if I was dumping hormone, I’d be having some hyper like symptoms. I didn’t. I didn’t/don’t feel any different. The DLE was interesting in that I could feel it coming on. I checked my snps and the ones I could find - 4 / 3 are -/- and one is +/-

[TSH110 in reply to phirestar]

What about the stress and anxiety you mention in the post could not they be symptoms? I definitely got very marked symptoms with mine the last hyper blast came on some time after the blood test showing I was hyperthyroid but it could have been a later episode as the next test showed I had hypothyroidism. I had mixed symptoms of both hyper and hypothyroidism eg heart problems (you mention abnormal heart function in your case) , double vision, anxiety, urticaria etc (hyper) and feeling freezing cold, depression, lethargy, slowness of body and mind etc (hypo). My TSH went up to 110 in c 2-3 weeks from 0 (or whatever the hyper reading was). I knew I was seriously ill by this time it was like being on a rollercoaster. It seems strange you feel asymptomatic with those readings I do agree.

[phirestar in reply to TSH110]

Bc I don’t/didn’t feel any different. I had a positive DRVVT test indicating APS in March. My ANA was negative. Bc of the APS possibility, I was referred to a Rhuematoligist who refused to see me bc I feel fine and APS is a blood disorder (autoimmune). I’d never in my 68 years had a doc refuse to see me. The first Hemetoligist didn’t have labs, wasn’t aware of the protocol for follow up labs and said we’ll just watch it. In October the second Hemetoligist didn’t know why I was there, didn’t have labs(I hand carried labs to his office), the front desk said we know nothing about APS but you could do a consult. I couldn’t understand or wrap my head around these guys not knowing published protocol. I did the consult 6 weeks later and he took copious notes and said referring you to UCSF. I still hadn’t had the follow up labs by October. I finally got them ordered between my pcp and dermatologist and I’m igm positive in both antibodies. APS w no prior history at 68 is unusual based on my research. The rash was biopsied in September resulting in DLE. The Rhuematoligist who refused to see me agreed to see me for DLE and based on labs and no symptoms ruled out any systemic/rheumatic diseases. DLE is also unusual at my age with no prior symptoms. I could feel the rash surfacing in June but didn’t deal w it then as I was already in stress overload from the referral process not working and never having encountered anything like this in my life. It didn’t hurt - I was just turning purple! In June I told my pcp how stressed out I was bc this is the first time in my life that there were simply no choices that I could make. She suggested meditation and yoga. I also told her I thought I could use a mental health unload to no avail. This is why I’m thinking the tsh number is stress induced bc I’m pretty sure that’s what happened w the DLE. The time line fits to perfectly. I researched the t wave abnormality and it can be stress induced. I passed the cardio stress test well above range and the t wave normalized under exercise. I’ve never gone hyper and still don’t have hypo/hashi symptoms. I’ve not had thyroid symptoms since I was dx’d at 65 and hashi 8 months later. It took me about 2+ years to wrap my head around that bc I simply don’t profile the way most do. My pcp is a well respected doc, is an internist and practices functional medicine. She agrees I’m a complete outlier and a bit of a puzzle. I don’t fit the protocols for thyroid disease. My dermatologist also says the same thing. My abnormal heart function had to do w the t waves and the cardiologist has said heart in excellent shape. I have some minor valve leakage which he says is normal for my age and not related to APS. The other symptoms you’ve mentioned were part of my reactions to the 2 thyroid meds I was on for just over a year. For the last 2+ years I’ve not experienced any reactions but I’m taking a compounded t4 med in an olive oil suspension. I sleep fine, no change in energy, no mind issues, weight problems - all the usual hypo/hashi symptoms I don’t seem to have. The other surprise was even w my tsh as high as that, my lipid panel was great. So this is why I think the tsh is due to stress/anxiety. Very few people believe I don’t have symptoms but my pcp has seen this over the last year. I’m curious what my ft3 is bc it’s never gone below 3.2 when I got so sick on the thyroid meds. In April it was 3.7. I’ve attributed my lack of symptoms to an optimal ft3. So while most seem to collect more common autoimmune diseases, I’m collecting ones that aren’t common, don’t have predisposition for based on known genetics and are unusual at my age w no prior history. Just a bit more stress/anxiety. I’m not particularly stressed about not hearing from my doc yet bc the full panel isn’t done yet. I just think I need to keep the stress/anxiety under control and see if tsh comes down. Im not even sure she’ll increase dose w no hypo symptoms but that result certainly surprised me and the only thing I could come up with was stress/anxiety from March to getting the 2nd APS labs run in September.

[TSH110 in reply to phirestar]

I never heard that stress/anxiety raises TSH only the other way around. I hope you get it all sorted out. ☘️🍀☘️

[phirestar]

Well, with the reactions I had, I’d probably be in the hospital or dead!

[AliF]

I’m not advocating this at all but I stopped taking all my tablets for a short time because I felt soooo unwell. Didn’t really feel any different. I had a blood test and my TSH was 57. Have immediately re- started on a low dose of Levo and T3 and I feel much better. Who knows what is going on. I’m about to do another blood test to find out but this is the best i’ve Felt for about 4 years —-on a lower dose of Levo and T3 than I was on before I stopped and no HRT. But I re- iterate. I am NOT advocating you to stop, decrease or change anything without checking with a professional medical practitioner.

[phirestar in reply to AliF]

I feel fine. I seem to be asymptotic! That’s part of why I was so surprised at the tsh level.