I'm looking for advice for a doc appointment fi... - Thyroid UK

Thyroid UK

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I'm looking for advice for a doc appointment first thing on Tuesday.

Beads profile image
6 Replies

Where to start? This may become rambling so head out and make yourself a cuppa before you commit.

OK, I was feeling rough (rougher than normal) back in April, got a thyroid test to see what my levels were, TSH below range, T4 mid range, T3 below range. I came here and we chatted and decided that I needed my selenium checked due to abysmal conversion and other than that (due to an exclusion diet, not low calorie, not with all the nuts and fruit I was eating) that I would wait and see what my 'routine' results came back with at the beginning of June.

I wear a fitbit, it monitors my resting heart rate, I didn't think about it at the time but a few weeks later I noticed that my RHR had increased slightly. I went back and had a look at the trace over time. It had gone on a downward trend just before I started feeling really rough (before I was given levo my RHR was routinely dipping into the 30s). So was a downward trend from about 60 to mid 50s 'significant'? I headed back to last year, saw another downward trend last summer, couldn't remember feeling too bad then, then remembered that when we went back to school (I work in a school) I had a period where I was losing hair more than normal and basically broke all my nails within a very short space of time, both of which could be explained if my thyroid levels had dropped. I have no idea why they would drop as I've not had a dose change since the doc put me up to 100µg. The upshot of that is that I'm now tracking batch numbers, just in case there's batches of levo that might be slightly underpotent. Yeah I know, unlikely, but I'm grasping at straws here.

Anyway, RHR climbed back up to around 60 and has been ticking along merrily. I don't know whether it coincided with a different box of levo or not as I only noticed it after the fact.

Fast forward to June. Thriva told me my blood test kit was on the way. I had a sore eye, ignored it. It was still sore the next day and swollen, I had an eye infection. Got antibiotics from the doc, double whammy oral and topical (normally I'd ignore it until it got blatant or went away on its own but it was 4 days before the half iron and I didn't want a swollen eye to stop me from wearing my goggles/swimming). I read the bumph that came with the antibiotics carefully knowing I was going to do my blood test 6 days later, according to that the only issue would be if I were having liver tests, nope, should be fine doing the tests, the antibiotics wouldn't interfere.

Half iron came and went, swim and cycle went well, the run was a whole other ball game, I had absolutely nothing left in my legs, it was a real hard push to finish, my mantra of run-when-you-can-walk-when-you-have-to was really put to the test.

A couple of days later I bled my fingers and sent my sample off. A day later they received my sample and a day after that my results were ready. Or some of them. They couldn't process some of them due to haemolysis. So I have T4, T3, antibodies but no TSH (the only thing the doc looks at). I have ferritin but none of the other iron results. B12 but not folate. Triglycerides and HDL but none of the other cholesterol results. Based on these their doc says everything is 'normal' (despite the T4 being higher than last time when he said I was 'overmedicated' due to low TSH, but we don't listen to that).

So in total they did 11 out of 21 possible tests. If they can't do 50% of the tests due to dodgy samples they send a new kit out, so they scraped past that (probably because the tests they did they could do from the purple tube but the ones they missed they couldn't). So as they'd done more (11/21) they wouldn't send a new kit and as my results all looked 'normal' they'd apply credit to my routine December test. They also said it was likely over zealous massaging of the finger to get the blood out was the most likely cause of the haemolysis; though I thought it might be that it was a hot day (their kit says if it's over 25°C to not do the test, the weather man was forecasting 23°C, so may have got hotter). Anyway, I was fuming, haemolysis is obvious from the sample (normal serum, back when I worked with it, was generally yellow/green/straw sort of colour, haemolysed samples were orange/red, it was obvious); my stance is they should have noticed and contacted me before testing anything to ask if I were happy to get incomplete results or if I wanted to redo the test. I'll leave how blue the air was to your imagination.

So upshot was, after a couple of back and forward emails I used the credit and yet more money and replaced the tests that were incomplete. The kit came and 2 weeks after doing the first test I drained my fingers and sent another tube of blood off (only one tube this time). It wasn't hot, I know I didn't over massage my fingers this time, just patiently dripped, poked a second finger and got close enough to the line to call it quits.

They received my sample the next day.

The next day I got an email saying they were unable to process my sample and were sending out a new kit.

I asked what was wrong with my sample, reply is it was haemolysed.

I will accept I could have buggered up the first one, but I was so careful with the second. And it was no where near as hot as the first one, probably struggling into double digits.

And after all that waffle here is what I need help with. It's not necessarily connected with my thyroid but you guys have much more experience with dealing with docs and hopefully getting them to do what you want.

2 samples in 2 weeks, both haemolysed. I went back to the data sheet for the antibiotics just in case I missed something. Side effects, more than 1 in 10 people get diarrhea (spell check says that's correct spelling but I thought there was an o in there somewhere) and to think that's the one I was worried about with doing the half while taking them. Then it lists the other side effects in order of frequency. The very last, very. very rare side effect is drug-induced auto-immune heamolytic anaemia. It'll cause haemolysis. It's an auto immune thing and we know the auto immune diseases love to have their friends over for a party.

Symptoms are tiredness (which is normal for me, but also in retrospect the current tiredness is the same slogging through treacle tiredness that I had before the thyroid diagnosis, just before the blood donation people told me to go away as I didn't have enough iron to donate, 'go see your doc'; which isn't normal for me), faster heart rate (see that bit about RHR right at the top is now relevant, I've been running at 63/64, which doesn't sound high but if a decrease from 60 to 55 from low thyroid hormones makes me feel rough then an increase from 60 to 64 is also sort of relevant), dark wee (coz of lysed blood cells coming through, again, not something I've been paying attention to but now I'm looking my wee is darker than normal, when it's not fluorescent yellow from excess vitC), there are a few other symptoms that I check and some that I don't.

So, advice please, how do I get the doc to test? Do I tell him my suspicions or just tell him I'd like a blood test to see if there's 'anything sinister' going on not related to the thyroid/normal feelings of tiredness? Do I point out the antibiotics and their possible side effects (I rang the out of hours doc as couldn't even get connected to the normal doc, so it's only written as a 'letter' on my record, I have online access, I've checked, I don't have confidence that anyone from the surgery has even read it)? Or just assume that he'd check my record?

Has anyone else with Hashi's had this experience? How long will it last? The info says it clears up once you stop taking the drug which induced it, which was 2 weeks and a day before the second test, do I need to wait until I'm circulating a different batch of blood cells or will it improve before then? If it was drug induced how likely is this to kick off a whole new auto immune ball game?

And now I've finished my waffling on, a bit of light hearted fun. Sprog 2 has recently got into cross stitch. They've got a pattern that says 'Auto Immune Diseases, the only thing strong enough to kick my arse is myself'. I think I know what I'm getting for Christmas this year!

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Beads profile image
Beads
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6 Replies
kittyelen profile image
kittyelen

Sorry I read your post and was a bit confused, if you had a test in April below range I would say it is normal to ask your GP for a follow up, I am not sure about these thiva tests but if below range in April why would the GP not do a follow up test?

Also if wee is darker you could just be dehydrated, you do seem to have a lot on your mind I found your post a bit hard to follow but I wouldn't be embarrassed going to your GP -- do you have a diagnosis you mentioned hashi?

Beads profile image
Beads in reply tokittyelen

Sorry, I waffle, too much info.

Why hasn’t the doc done anything about under range T3? Coz I’ve not told him, hoping it’s just a blip. He only looks as TSH, if he sees that’s under range he’ll want to reduce my levo, I don’t have the energy for that fight at the moment.

Why am I wary about giving him too much info regarding what I think is wrong? I’m pretty sure I was labelled an over anxious mother 25 years ago when I insisted my son was deaf at his 8 week check, I know I was labelled as an over anxious mother when I insisted my son was deaf at his 8 month check. He was fitted with hearing aids just before his first birthday due to being profoundly deaf.

Why am I not confident that anyone has read the letter from the out of hours doc? Because I went to the doc just over 2 years ago, said I was knackered, said I’d been turned away from blood giving, asked for iron test. Iron was ok, TSH was over range, T4 was under range, I was told this could be transient, re-test in 3 months. I was back there before that, begging them to bring forward the test, to be told no, the lab wouldn’t do it. They re-tested at 3 months, TSH was over range, antibodies were positive. They did nothing. It took several months of cancelled appointments for me to get to actually see a doc, they insisted on another test, TSH over again. If someone had reviewed the second test I should have been contacted, so I’m pretty certain it was filed but not actually looked at. If someone had looked at my medical history they’d have seen this was the first time in 27 years I’d been to the doc other than 2 quite normal pregnancies, so that should have flagged up a problem.

Wee being darker? I’m one of these people that puts the kettle on on a regular basis, being dehydrated (even when it’s hot) is not my normal state of being.

kittyelen profile image
kittyelen in reply toBeads

Ah ok well if the thiva tests were to show an issue you would need to see the gp regardless. They can be useless and it is effort chasing up but if this is affecting your day to day life ask for a GP appointment. You are on levo i dont know much about this med but surely it is normal to have a review? Eg im on carbimazole and bloods tested every now and then. Dont over think what is the gp thinking of me....etc ....if something does not feel right you have a right to ask.

ClareP5 profile image
ClareP5

Hi, antibiotics mess with your gut biome and that takes a while to fix - I use kefir and kombucha. I don’t understand about the side effects of the ones you took, so not much help. But I have noticed that infections that require antibiotics take longer to get over these days. I used to push through it, now I have to rest up - v dull!

I’m sorry. I have absolutely no knowledge at hand to give a supportive reply here, but I’d did want to say I very much enjoy your writing….and this:

Side effects, more than 1 in 10 people get diarrhea (spell check says that's correct spelling but I thought there was an o in there somewhere)

…made me laugh out loud.

I hope someone more sensible comes along with good advice for you!

Beads profile image
Beads in reply toJosephineinamachine

Diarrhoea - Ah, there you go, different computer, it does have an o in it, I must have the home computer set to American rather than English, will have to sort that out.

Glad I put a smile on your face.

😀

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