Please help - worrying thyroid test results - need advice on how to proceed

[MiniMum97]

This is a bit of a long one, but I'll try to keep this brief as possible - but happy to add more detail if needed.

I ended up in A&E on NYE with severe palpitations and breathlessness. They had started a few weeks before in mid-Dec. A&E did some tests said everything was normal and was told I would be referred for a 24 hr heart monitor. I told them I was hypothyroid and assumed as a result they would have tested my TSH. I looked for the results online a week or so afterwards but they had not been added so assumed that they may not be.

I continued to get palpitations and breathlessness (although they have seemed to get better over time tbh), and I also have still had some residual symptoms from when I became hypothyroid, so posted on this forum for advice as I wondered whether I would benefit from dose increase. Opinion on the forum was that the issue was likely to be my low ferritin (that I have also struggled to increase).

In Feb, I contacted the hospital to find out what was happening with my referral and was told that the consultant wanted to see me before fitting a heart monitor and the wait was about 15 weeks.

I then went to see a GP again to see if he would check my iron and magnesium levels to check that the magnesium and serum iron was not too high while I was waiting. He looked at my hospital bloods on his system, and said it all looked fine and proceeded to patronise me insisting it was probably stress and I was to stop worrying and it would all go away. I was initially annoyed but then thought perhaps he was right so tried to focus on reducing stress. I also told him I was hypothyroid.

As I then knew the hospital tests were available online, I checked them and realised that, shockingly, no TSH test had been done. I therefore decided to do my own testing of iron status, magnesium, TSH, T3 and T4. Mainly so I could rule things out, I didn't really expect to find anything significantly wrong with my thyroid results, and also because I was still considering trying to up my dose slightly to see if it would help with residual symptoms.

So my thyroid results came in and scared the life out of me:

Thyroid Function

THYROID STIMULATING HORMONE *<0.005 mIU/L 0.27 - 4.20

FREE THYROXINE *30.2 pmol/L 12.00 - 22.00

FREE T3 *11.6 pmol/L 3.10 - 6.80

Over the same period of time, I have also had a significant increase in breast size (sore and veiny), plus putting weight on my stomach, I have also been getting hot flushes, significant increase in hunger and sex drive, dizzy spells getting worse and feeling light headed. Really light periods and some nights of disturbed sleep (different to my normal insomnia). I had put all this down to some sort of hormonal change (having done a pregnancy test which was negative) either peri-menopause or raised prolactin levels so went to see a GP again last Tuesday. He has booked some tests and have just seen that these include TSH finally. Really cross that no-one has checked this before. Suspect that some of these symptoms are to do with being "hyper" however. Could all of them be?

What do I do now? Results came in yesterday so I did not take my levo today. I have my blood test at the surgery tomorrow (bit late in day but given my suppressed TSH it probably doesn't matter). Do I stop levo for a 4/5 days and then start at 75mcg? (I am currently taking 100mcg) - presumably need to retest asap - how soon after dropping dose? Am really worried GP will panic and take me off altogether. Should I hand the results in to the GP? Any thoughts on how to handle this would be appreciated.

I am also confused as to how this had happened. I was diagnosed last May and my levo was gradually increased from 50 - 100 mcg between May and Sept with blood tests every 6-8 weeks. ALL my results from before and after diagnosis show slow and steady increases and decreases. I have been on 100 mcg since Sept and blood test in Oct showed T4 and T3 were both 50% way through the range (so not even towards the top of the range) and TSH was under range at 0.04. This test was 6/7 weeks after starting. How could it suddenly change presumably from Dec when palps started.

I think it's unlikely to be hashis as I have had 5 blood tests now showing negative antibodies and no indication of any hashis type symptoms up until now (ie wavering symptoms) and all blood tests have shown a distinct pattern. Plus a hashis "flare" surely wouldn't last 4 months?!

Any thoughts on what could be going on here?

[greygoose]

Well, it certainly looks like a Hashi's flare to me. Those numbers are typical of a Hashi's flare.

I'm afraid even 5 negative tests cannot completely rule out Hashi's because some people never develop high antibodies. What you need is an ultrasound to see if there's damage to the gland.

And, yes, a Hashi's flare can last four months, it has no predetermined duration. I always think the name 'flare' is misleading because it suggests something rapid, but that isn't necessarily so.

[MiniMum97 in reply to greygoose]

Thanks for coming back to me so quickly. Yes it does sound something more rapid which is what I thought. When you say "those numbers are typical of a hashis flare", is that because they are so high? Is there anything I can show my doctor to say that this is something that can happen, and my dose shouldn't be changed as a result? Is there something I can show my doctor regarding the fact that not everyone with hashis has antibodies - I strongly suspect this is something they would not be aware of? Am I right to stop taking levo for few days? Should I continue at 100mcg after this?

[greygoose in reply to MiniMum97]

I say that because of past experience. With a Hashi's... let's call it a 'hyper' swing, which is much more descriptive of what it is than 'flare', the FT4 level usually goes up to around 30, and the FT3 to around 11. If it were an over-dose, it could be any number, but probably wouldn't be as high as that. Besides, how could you over-dose on a fixed, prescribed dose? And, if it were Grave's, the numbers would probably be higher.

But, that is just what I've observed during the time I've been on here. I don't know of anywhere you would find that written down. I wonder if any research has ever even been done on the level of thyroid hormones during a Hashi's 'hyper' swing. Probably not.

In fact, i don't know anywhere where they go into the details of Hashi's. And certainly, the average GP knows absolutely nothing about it. Not many endos do, either. They all prefer to just ignore the antibodies - if you have them - and pretend they're of no importance. So, if you don't even have them, I can't imagine them ever taking it seriously. It would take a very open-minded doctor to accept it, and doctors are not known for their open-mindedness!

If I were you, I wouldn't even show my doctor those results. I would just stop my levo for a while, until I felt the need to take it again. But, I will say one thing : there's no guarantee that your palpitations and/or breathlessness were due to this sudden rise in levels. Because another thing I've noticed is that people very often don't get hyper symptoms during these swings. And very often believe they're still hypo. Come to that, palpitations and breathlessness can be hypo symptoms. Or they could be symptoms of low nutrients. Did you get your ferritin tested? How about B12? But, there's absolutely no point in testing magnesium, because it will always be in range, due to the way the body handles magnesium. However, that does not mean that you aren't deficient. So, I would just take some, if I were you.

[MiniMum97 in reply to greygoose]

Thank you. If that seems to be the case with the numbers then it does suspiciously look like a "hyoer swing" (better name as you say!).

I am still waiting for my "iron studies" results back - hopefully they will come in tomorrow. B12 was also tested but they did active b12 instead of serum as Medichecks have stopped offering serum (even though that's what my test was for if that make sense). My active B12 was over 300 - higher than last time even though I have only been taking a b complex for a number of weeks (whereas before I was also taking 1000mcg b12 as well). I wasn't really feeling any better taking it so thought I would see how I did without the b12 single supp and I haven't noticed any difference in terms of low b12 type symptoms. Before I was diagnosed I was getting tingling and numbness, but that has been much better since being on levo and hasn't got any worse since stopping b12 single supp.

I tested magnesium to check i wasn't taking too much - I already take it and upped my dose just before the palps started so wanted to check I hadn't overdone it and that was the cause of the palpitations. I don't want to stop taking it though (ie to see if the palpitations stopped) because it helps with my muscle pain and stops me being constipated. If I stop for a few days I get constipated and I get leg cramps which keep me awake at night.

I am concerned that my GP will test my TSH tomorrow and panic. Not sure whether to put off the test or not.

If I stop the levo do I just restart at 100mcg again when I start to feel hypo?

Do you know where I can get a thyroid scan privately so I can confirm this? I would like to know for definite if I have an autoimmune condition. I can post a separate questions about this if that's better.

Feel v upset that it now looks like I do have an autoimmune condition. Thought it was unlikely up until now given my results. BUt thank you for your assessment - the results were confusing and your explanation makes sense of them

Thank you for taking the time to respond so fully.

[greygoose in reply to MiniMum97]

An active B12 test is the best, because it doesn't just show what's in the blood, but also what's getting into the cells. If it was over-range, just stop your B complex for a while and see if it goes down. I don't think it's anything to worry about, given that you have been supplementing.

The problem with magnesium testing is, I don't know if it would show if you're taking too much. But, excess magnesium is excreted, I've been told. So, that's not a problem. How much are you taking?

I think it might be a good idea to put off your GP tests for as long as you can. You will need them done eventually, of course, but put it off to give the TSH time to come back up again. It's such a problem with these silly GPs and their fear of a suppressed TSH, isn't it! But, yes, restart on 100 mcg when you feel the need. It's not a very high dose.

I'm afraid I don't know anything about private scans, although I'm sure i saw someone post about having one, the other day. So, it would be best to post a new question about that, yes.

Is it really so terrible to find out you have autoimmune thyroiditis rather than hypothyroidism of unknown cause? Does it really make all that much difference? I don't think so, personally. I can't see how it's worse. Which ever it is, you're still on thyroid hormone replacement for life.

Keep us informed how things pan out.

[MiniMum97 in reply to greygoose]

Thanks again for replying. I went to the test this morning mainly because of indecision about what to do (!!), but luckily they couldn't do the test as couldn't find a vein so it's been postponed until Thursday so far. Will think about postponing again although not sure how long to leave it.

I am taking 350mg of magnesium a day and recently changed from magensium citrate to malate (and this does seem to have helped the muscle pain) - I understand this should be OK - but have had some not so good kidney and liver results in the past so just wanted to check I am excreting any excess.

Personally, I would prefer that my GP was aware of what has happened particularly because I seem to have other hormonal symptoms that may or may not be linked. I also have an upcoming appt with a cardiologist. Not sure what to do about that either.

I do think it's worse knowing it's now likely that I have an automimmune disease. It means I am at greater risk of developing another automimmune disease which is worrying. It also means I probably need to go gluten-free. Having been on various diets due to IBS I know how restrictive they can make your life, so being strictly gf for life is a bit depressing tbh. Sure I will get over feeling this way but I think some emotional adjustment to such news is understandable.

Will definitely keep you all informed

Thank you again for taking the time to reply.

[greygoose in reply to MiniMum97]

Well, I've had Hashi's for many, many years, but have not developed any other autoimmune disease. And, as for gluten-free, it's something you should try, but I have to say that it is not something that works for everyone. It didn't make the slightest little bit of difference to me, so I gave it up and didn't feel any ill effects when I started eating gluten again.

But, what you do need to be careful of is hidden soy. It's difficult to find a loaf of bread in England now, that doesn't contain soy flour. And, that will make you bad because it impedes thyroid hormone from entering the cells. And, that has nothing to do with Hashi's. You need to avoid all forms of unfermented soy - soy milk, soy protein, soy oil, etc. And any processed food in the UK is bound to contain at least one of them. You therefore need to cook everything from scratch. And, while you're doing that, you can cut out the gluten at the same time. Get gluten-free flour and make your own bread, etc. It doesn't need to be a restrictive diet, just a careful one. Processed foods also often contain artificial sweeteners, and that is something else you need to avoid.

What you tell your GP is entirely up to you, of course, but do be aware that he probably won't have the first idea what you're talking about. Doctors do not know about Hashi's.

350 mg magnesium should be ok. But, if you want one that is heart-friendly, try magnesium taurate.

[MiniMum97 in reply to greygoose]

Hi Yes, am already avoiding soy and due to being on a low fodmap diet, prepare pretty much everything from scratch. Why the need to avoid artificial sweeteners from a thyroid perspective - I know they are generally not good for you or your blood sugar?

I won't be going to GP without supporting evidence - in case they take away my meds altogether. Have posted again to see if anyone has anything to say flares exist and they can cause "hyper" appearance of bloods. Just spoken to husband who says I should just get a private scan, so may do this next.

Aware of mag taurate - wasn't sure which one to go for when changing as had muscle pain like fibro, and heart palps. The malate does seem to be helping the muscle pain, so will stick with this unless palps don't go away and will then try taurate.

Thanks again for your time.

[greygoose in reply to MiniMum97]

I'm sorry, I can't remember the details, nor where I read them, but artificial sweeteners do have an effect on the thyroid. So, if you're already preparing everything from scratch, there's no reason why gluten-free should deprive you of anything. You can buy gluten-free flour, rice flour, coconut flour, etc, and make bread and other things that you enjoy.

[MiniMum97 in reply to greygoose]

I had a massage at the weekend and she touched my throat a couple of times and it was incredibly sore - is this another sign do you think?

[greygoose in reply to MiniMum97]

Could be, I don't know. It's not one I've ever experienced.

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[jimh111]

It looks like your thyroid is pumping out extra hormone even though you don't have Hashimoto's. Your GP needs to see these results and refer you to a specialist. What brand of levothyroxine are you taking, is it on prescription? I would hold onto some of the tablets. If your thyroid is checked by an endocrinologist and there is no problem then you need to submit a 'yellow card' as the levothyroxine tablets may be faulty.

[SlowDragon Administrator]

Have you had vitamin D tested?

Have you changed brand of Levothyroxine?

[MiniMum97 in reply to SlowDragon]

Not for a while (vit d). I take 5000iu a day since last test in Oct. Planning to retest soon. Have nit changed brand.

[Eileen54]

I have has hashis as well as atrial fibrillation , which gives palpitations, if your medication is too high it can set off the AFib symptoms, this happened to me last year with a trip to A&E and overnight stay in CCU. The cardio reduced my meds said I was taking to much, I am now under medicated and trying to come to some balance

[jimh111]

Forgot to say your fT3 is very high, it doesn't usually go this high simply by taking too much levothyroxine. Assuming you are not taking any other hormone or substances such as iodine then this strongly suggests your thyroid gland is flaring up even if you don't have antibodies. You need to have your thyroid scanned and perhaps have some beta blockers prescribed to protect your heart in the meantime. Also possibly a beta blocker that inhibits T4 to T3 conversion such as propylthiouracil (PTU). I would stop your levothyroxine for the moment and see your GP soon.

[Espisnowwoman]

U could also have graves disease. Sime of ur symptons could be menopause. Lab work will show both.

[Mermaid238]

Hi I am going through similar thing _ I started with major palpitations shortness of breath about three weeks ago . I spent Friday night in ER To bring down my heart rate - erratic. . My TSH was erratic on last two or three tests. I think armour has some problems with the thyroid meds because they told me my 15 mg lot number was the lot number for 30 mg. I take 15 mg and a 60 mg Arnour Thyroid med. I am much older than you I am 82. They want me to take a Beta Blocker. I also have hi BP and I take 20 mg Lisinopril. I wonder about these fillers too God knows what they put in the meds in China where it all comes from. I dont want 6to take the Beta Blocker but I dont know how much longer I can stand these palpitations they are huge.