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Avatar universal

Nsvt and scared to the point I can’t function.

I’m really struggling and worried about my mental health. So I have a loop recorder that I got put in almost two years ago. In May of last year (2019) I had my first official run of NSVT it was 14 beats long. Because of that they had me get a cardiac MRI which was completely normal. They decided I needed no treatment other than to stay on the 200 mg of Toprol XL I was already on to control my SVT and atrial tachycardias. I managed to go all the way up until two weeks ago (July 14) before I had another run. I was sitting reading something on my phone when my vision went slightly blurry then I felt my heart go irregular and I got a heavy rush. It was a total of 12-13 beats. It was something like five beats in  a row followed by a normal beat than three more beats in a row, normal beat, three more etc.... They also thought there was one more episode that day right after but it looks like it was just a repeat of the same episode on the monitor. Four days later, I had another episode when I was laying in bed and I believe that was 8 beats total. I’m terrified. They (my EP and his PA) however are not worried and told me that because I have a structurally sound heart it’s ok and they don’t need to change anything. I asked what if I have more and they said they would still keep it the same. I don’t qualify for an ablation or an ICD. That I need to be reassured they have no reason to believe it would be life threatening. But in my head I know arrhythmias coming from the ventricles are bad news. I can’t seem to wrap my head around the idea that it’s not a concern or that If my heart is capable of causing NSVT what stops it from going worse- which is what drives a lot of my anxiety. This has bothered me so much I have been crying nonstop. I barely eat, sleep and so on. I told them all of this and I do have a therapist but my fear for well over a decade has always been having a ventricular arrhythmia and here I am. I don’t personally know anyone who just lives with NSVT, has a normal life and doesn’t treat it so I think that’s also causing me distress. I feel every beat which is terrifying. There’s no one like me for me to talk to and it makes hard. I also have other medical issues and this on top of it just feels like too much. Is there anyone who has experienced something similar or can help me with this? I don’t want to be an anxious mess who doesn’t live life. I just don’t know how to deal.

And here’s something I should add- I just recently got diagnosed with severe hypothyroidism, my TSH was 96.2- yes that high, I previously only suffered from Hashimotos but had a normal TSH until March and on this July 7th they had me start Synthroid 25mg. That stuff is horrible I haven’t felt well since I started it and I can’t help but feel it helped to set off the NSVT which my EP doesn’t feel like it did. But it had been a whole year since my last episode and only a week after the medication. My endo had me stop the Synthroid last Sunday after the last NSVT episode and we have taken this week off to try and figure out what to do.

I also have potassium and sodium issues which I take medication for, asthma and a few other controlled issues.

Sorry if this is all over the place. My mind is going in a million directions.
11 Responses
Avatar universal
Hi there.  You sound precisely like me and my experiences.  About 10 years ago PVCs hit me like a freight train.  Completely destroyed me mentally.

I too had a cardiac MRI...came back perfectly fine.

I had every test you can have short of a heart cath.  Everything came back fine.

I played basketball in college.  I'm now 45.  Three things helped me and I'm going to share them with you in the hopes the "might" help you.  Each person's experience with these devil heart arrythmias is different in terms of what helps.  

I will tell you this...you are not crazy.  You are not alone.  This happens to a lot more people than you think.

I was debilitated by these.  Started when my wife was pregnant with our daughter.  I was so angry that it took away my enjoyment in life

I searched high and low.  I was on the table for an ablation (aborted).

They put me on Metoprolol (horrific drug...hated it...made everything worse).

I tried Magnesium, Taurine, potassium, all the stuff you read about.  Seemed like it worked once in a while.

What finally worked FOR ME? (I stress the FOR ME part as everyone is different)

I was told by a doctor from justanswer.com to get tested for SLEEP APNEA.   Weird as that sounds ...look it up.  I can aggravate arrythmias.  

I was tested at my request and low and behold I stopped breathing 20 times an hour in average.

I got on CPAP.  Got better almost immediately.

I got COCKY...stopped CPAP...got worse again.  Got back on CPAP...got better.

CPAP has been a life changer for me.

If you've tried things and are looking for a ray of hope (as I was) request to be tested.  It's easy to test for Sleep Apnea.

Lastly...I know where you are mentally from what you wrote.  I was there.  As hard as it is, remind yourself you've been tested, it hasn't harmed you.

You're not "anxious" like they keep telling you.  If your heart would calm down you wouldn't be anxious anymore.

Get tested for sleep apnea...you have nothing to lose
1 Comments
Thank you for responding! I’m sorry sorry about my delay.
So did you have runs of Pvcs (nsvt) or just a heavy load of them? It’s interesting you mention the sleep apnea I would have never made the connection. What if you have them during the day could the apnea cause it then? Years ago I got tested and had it very mild but never did anything about it.
1807132 tn?1318743597
I know you are scared and stressed.  It's normal to feel these emotions when issues arise with out hearts but you can trust your doctors.  They would not mislead you that you have nothing to worry about at this point.  It is possible the change in medication or hormone fluctuations are contributing to your current issues but the more you can find ways to destress and let go the better both issues will respond.  Stress releases it's own type of chemicals that can affect our bodies in adverse ways.  Taking the time to deep breath and remind yourself to trust life will do wonders for your well being.  The final thing I will say about your heart rhythm issues is that the rule of thumb when it comes to VT is if it doesn't sustain then it isn't anything to worry about.  It really is only when the heart is damaged or diseased and/or if the signal gets caught in a loop it is unable to break that things like ablations or ICDs are considered.  A heart doctor will always err on the side of doing less because the risk needs to be worth the reward to intervene.  What is really important to know is the heart is an amazing muscle that can beat all sorts of crazy ways and still keep us alive.  So take some time to make peace with having heart rhythm issues and try to put your focus on mental well being by working on your stress and anxiety.  It will help make a world of difference.  Take care.
2 Comments
Thank you for your response! Sorry to respond so late I didn’t receive any notifications so I assumed no one responded even though all you kind people have. Thank you.

So I really have been trying to relax about it all but im certainly failing in that regard. then to top it off I had another run of NSVT today and it really sent me spiraling. I haven’t been on the thyroid medication since July 19th so I can’t blame that any longer although my thyroid remains untreated. I guess I just don’t understand why if my heart is capable of doing this what stops it from not taking it too far and also why in some people this is benign while others drop dead. That to me makes no sense. I get the structural stuff but still I can’t wrap my head around it. It’s scary to know you have an arrhythmia that can be malignant. That’s what really gets me going. I don’t know why I’m just struggling so hard. Like today when they confirmed it was NSVT and I felt it all of course, I just broke down and cried. I’ve been crying on and off now for hours.

It’s just hard to see how life could ever be normal again. I went from normal to scared to leave my house or even move around. Before when I had issues I would always say well atleast it’s not ventricular issues but now it is That blanket of “safety” is gone. I also can’t stand how you never know when it will strike and you can’t cure it. My doctor said an ablation wouldn’t work for me right now, The anti arrhythmic medication has it’s risks (I do take 200mg of toprol) And I don’t qualify for the big thing which isn’t a cure either. Where is the research for ‘this field?? It’s so frustrating.
I see you got some good information from Barb who knows more about thyroid issues then I do.  I would say do what you need to do to get that under control and hopefully things will level out with your heart.  I will also add that it is important to try and work on the emotional toll this is taking on you.  Strong emotions send out chemicals in our body that contribute to inflammation and can make heart rhythm issues worse.  If this issue is creating great anxiety it might be worth talking to a therapist to help you find ways to cope.  Even just finding something to distract you when the fear starts to creep in may help.  Unfortunately there isn't anything we can do to stop what our bodies are doing sometime beyond following up with our doctors which you are doing.  Not to sound harsh but the truth is many of us will drop dead at some point.  It's life and accepting our mortality and putting our focus on the day instead of the end can bring enjoyment back to life instead of constant worry which isn't serving your better good.  I know easier said then done but you can overcome your fear.  Try to take control of it so it doesn't control you.  I hope you feel better soon.  Hugs.
649848 tn?1534633700
Thyroid issues can mess with heart rhythms...  You said you had a TSH of 96.  TSH is a pituitary hormone not a thyroid hormone.  Did they test the actual thyroid hormones, Free T4 and Free T3?  I'm sure with TSH of 96, your actual thyroid hormones would be quite low.  

Have you started taking the Synthroid again or are you still off the med?  It's typical to start thyroid meds at a low dose, such as your 25 mcg but that would only be a "starter" dose.  It actually takes 4-6 weeks for the medication to reach its full potential in your body and it's not the least unusual to feel worse before feeling better when starting thyroid meds.  

That said - not everyone does well on Synthroid... you should ask your doctor for a different medication.  I didn't do well on Synthroid either, but did okay on Levoxyl, which is another brand of T4 medication.  You might also do better on the generic, Levothyroxine, than on Synthroid.  I didn't do well on Levo, but better than I did on Synthroid.  

Hypothyroidism and/or Hashimoto's can also cause/exacerbate anxiety or depression, as well.  Please don't delay in getting the thyroid treated.
9 Comments
Thanks for the response and sorry for the delay. I didn’t get any notifications I thought no one had responded.

So I have been off the thyroid medication (25mg) since July 19 but unfortunately today (aug 21) I had another run of NSVT so apparently it’s not the medication? Well really they don’t even know. Ugh. The medication may have aggravated it causing the first two runs in July but now there isn’t really an excuse.
So my TSH is extreme high but surprisingly my Ft4 and t3 is still within normal limits. It’s on the lower side of normal but still working to some extent.  I have been retested numerous times so the numbers are correct because at first there was that questions. My antibodies are also over 2000. As of now my thyroid is untreated. I asked if thyroid could cause Ventricular issues but I was told no that it caused atrial issues. I just don’t get why I went from never having ventricular issues to now all of a sudden I am. They have tried to reassure me that because my heart is normal it’s ok but I just keep thinking if my heart can do it who’s to say it can’t go malignant? After the told me about the run today I broke down. I really don’t know how to mentally get passed this. I really do feel like a ticking time bomb. The worst is I feel it when it happens but I also deal with other palpations such as atrial tachycardia, pvcs and PACs so I never get a rest. It’s just a mess.
High TSH and low FT4 and FT3 (even if "low range") indicates hypothyroidism.  It's important to remember that not everyone fits into neat little boxes, such as lab reference ranges and just because your results fall within those ranges, doesn't mean you have adequate FT levels for your body.  

"Although it is well known that hyperthyroidism can produce atrial fibrillation, it is less well recognized that hypothyroidism can predispose to ventricular dysrhythmias. In almost all cases these cardiovascular changes are reversible when the underlying thyroid disorder is recognized and treated.Oct 9, 2007"  https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.106.678326

The above linked article explains how, both hyper and hypothyroidism affect the heart.   Hypothyroidism-related heart issues are, typically, resolved when adequate levels of FT4 and FT3 are achieved.  

As I noted previously, the medication prescribed to you (Synthroid) takes 4-6 weeks to take full effect and it's not the least unusual to feel worse before feeling better.  In addition, 25 mcg is a very small dose and almost certainly would have to be titrated upwards in order to achieve full relief from symptoms.  
Thank you for responding.
It’s funny it has been a nonstop battle with my doctors when it comes to them acknowledging that thyroid can cause NVST, ventricular issues. They refuse to believe it.
The issue is I don’t know if that’s my problem since I had a run last year of NSVT and my TSH, t4 and t3 were all very normal but who knows. I feel like I don’t really know anything anymore to be honest. The one thing is I’m scared and live in fear. It stinks. I want to treat my thyroid but I don’t want to aggravate the NSVT but if there’s a chance the thyroid is causing it I don’t want to leave it either. It’s insane that I’m 2020 they don’t have a better grasp on this stuff.
Whether the thyroid is the cause of, or simply contributing to, the NVST, you'll never know unless you treat it (the thyroid).  Even if it's not connected to the NVST issue at all, hypothyroidism can be dangerous if not treated.  It can result in a condition called myxedema coma, which is life threatening.  I'm sure you're nowhere near the danger stage, at this point, but symptoms will only keep piling up.  

Whether or not the doctors "believe" the NVST can related to thyroid or not, is sort of beside the point, right now, because your doctor has prescribed replacement thyroid hormones so apparently s/he believes you do have a thyroid issue and do need the medication.  It you take the medication and it helps the NVSTs, you'll know there was a link.  Remember, it takes 4-6 weeks for thyroid hormone medications to take full effect and the 25 mcg you were given is a very small dosage, so you might need a higher dosage before anything gets better.

Have you been tested for Hashimoto's Thyroiditis?  You'd need antibody tests for that diagnosis.  If you have Hashimoto's, the antibodies will eventually destroy your thyroid so it will produce nothing and you will need thyroid hormones for the rest of your life.  As destruction progresses, you'll have more symptoms.

I'm not trying to scare you - just to let you know that hypothyroidism can be dangerous if not treated.  
Hey! :-)
So yes I’ve been diagnosed with Hashi for years. My last antibodies check was over 2000 normally for me it’s around 1000 and as you know that’s well above normal. So I’m sure the hashi is why I now have the hypo.
I work with an endocrinologist who has been trying help. She started me on the brand name synthroid 25mg back on July 7th which made me feel horrible and within a week I had a run of nsvt which I had only had one other time before (At least on record) a year prior. However This episode looked different than the other one so that’s why we thought maybe it was the med. It started with 6 beats then a normal beat  four more than normal beat than three more with a few fusion beats mixed in which I felt it all of course. To me that seemed like my heart was having a battle! Then five days later I had another short run of the NSVT - 9 beats I believe. That day the endo decided to stop the medication because she was worried more about the arrhythmia than the thyroid. My Cardio however continued to say no it’s fine since my MRI and echo are normal but my endo was Still worried and didn’t understand why he would be ok with me having a arrhythmia like that. SonSince my t4 was still “normal” that bought us some time (she also told me my risks) We decided to take a break on the med to see if it would happen again so maybe we could narrow it down and for a few weeks it was fine but on Friday I had another run. So now no one knows what’s what and I’m stuck in the middle. Cardio wants me to restart the medication, he doesn’t believe it was that and to just ignore the NSVT like it’s so easy and my endo suggested another thyroid med Tirostint (spelling off) so I can try their 13mg dose instead and hope I don’t have an issue.
Of course  I’m scared that the medication set all of this off In the first place but I also know I need to treat the thyroid. I’m terrified sooner or later the other shoe will drop and it won’t be so benign like they claim. Like I’m sorry but how can an arrhythmia that can be so deadly and dangerous in some just Be ok in others. I can’t wrap my head around that. It feels to me like it’s the whole well it’s ok now and we will wait until it becomes bad which to my brain feels like it will sooner or later. I don’t know It’s such a mess really.
I am in therapy to try and help with my anxiety but I just can’t get out of my head knowing ventricular arrhythmias are dangerous and I’m just suppose to go on like it’s no big deal.
And I know you aren’t trying to scare me I really appreciate the advice! It nice talking to people who actually get it!
I did mention previously that not everyone does well on Synthroid, myself included, and that it might be worth trying a different med.  

Tirosint is a good choice since it's hypoallerenic, with only 4 ingredients (the T4, water, glycerin and gelatin).  It's a gelcap so dissolves and is absorbed more completely.  I took Tirosint for approximately 5 yrs and did well on it, but it's very expensive and insurance doesn't pay for it since they want everyone to take the less expensive Levothyroxine.  Tirosint does (did?) have a program through which qualifying patients can get it for free... I was slightly over their income guidelines so didn't qualify for the free program and when the price got up to over $150/month, I could no longer justify the cost.  

When I went off Tirosint, I went to Levoxyl, which is another brand that people do well on.  Levoxyl may be covered by some insurance companies, though mine didn't cover it.  It's inexpensive enough to allow one to pay out of pocket - it was costing me less than $35/90 days.  

Thyroid hormones are dosed in mcg vs mg.  It's true that Tirosint has the 13 mcg dosage which other brands don't have and is okay for a starting dose for some people.  You could also split a Levoxyl (or even Synthroid) tablet easily to get a 12.5 mcg dosage.  That's such a small dosage it's unlikely to make much difference, but some people do need to start really low and work up slowly.

I'm disappointed in your endo for thinking that having Free T4 "in range" is good enough because it isn't.  With a TSH of 96, it's obvious that you need to be on the thyroid medication. I understand that you're afraid to take it, but I know from experience that not taking it will only make things worse.  
Thankfully my insurance covers brand so they have no issue with paying for the tirosint I should be covered as long as I need it.
When I took the 25 Synthroid brand my TSH actually went from the 96 down to 32 even in that short period of time. it has since shot back up of course. So my body seemed to react well To it In that capacity even at the small dose. My cardio said even if I don’t get the TSH to normal levels he would be happy as long as it’s lower. He said even a 6 would be fine. Under 3 is normal right? So they definitely aren’t looking for perfection just better. I am seeing signs now of an untreated thyroid. My hair is coming out In clumps and the weight gain is ridiculous.  
So if the t4 pill is replacing something that my body would naturally produce why is there such an issue with the pill and people with cardiac issues? I know when they found out I was having an issue both doctors kept talking about starting very slow so it wouldn’t cause me issues. One doctor made it seem as if it’s only a problem if I’m over treated while the other said no it can cause issue even if your still hypo. Really it’s exhausting.
You're lucky with the insurance - mine, at the time covered brands, too - just not that one because there are other less expensive brands that (they say) do the same thing.  

Your cardio worrying about your TSH is also worrisome because that means s/he's only worried about that one thing, not whether your actual thyroid hormones are adequate.  Most labs have a reference range of 0.4-4.50, though many doctors prefer for TSH to less than 3 - some even prefer it to be less than 2.  It's very important to understand, though, that TSH neither causes nor alleviates symptoms.   TSH is only a "messenger" from the pituitary to the thyroid gland.  It should only be used to "help" with diagnostics and should never be used as the sole means of diagnosis and/or determines dosages.

Yes, the hair falling out and weight gain are definite hypo symptoms and since you have Hashimoto's, they will only get worse (and other crop up) without medication as the antibodies destroy your thyroid.

Not everyone with cardiac problems have issues with Synthroid and as I've said, some of those that do, can do very well with a different brand of medication.  Medications have fillers, binders and dyes and not everyone can tolerate all of those.  Synthroid contains acacia, which many people don't tolerate well.  That's one reason that many do better switching to either Levoxyl or Tirosint.   You could even talk to your doctor about desiccated hormones (Armour, NatureThroid, WP, etc), which a lot of people do best on.   It's worth trying different ones to see which med/dosage works best for you.  
For those that have an issue with dyes, the 50 mcg tablets are white (have no dye) so some people can even use those and split them in half to get a 25 mcg dosage.  

"One doctor made it seem as if it’s only a problem if I’m over treated while the other said no it can cause issue even if your still hypo."  That's not true - over medication isn't the only thing that causes us problems.  Many of us have an equal number of issues with, both, heart and certain medications when we're hypo.  

It can be very exhausting and confusing because of the way Hashimoto's/hypothyroidism is treated.  That's unfortunate because it doesn't have to (and shouldn't) be that difficult.
20748650 tn?1521032211
COMMUNITY LEADER
You wouldn’t qualify for an ICD but if it’s “ruining your life” it’s probably appropriate to consider ablation.

1 Comments
Hey thanks for your response. So my EP doesn’t think an ablation would be appropriate because it would be like trying to find a needle in a haystack. I am getting a second opinion in September to get a second set of eyes on it and hope for reassurance.
Avatar universal
Hi there - I totally get the anxiety/fear/depression of having heart rhythm irregularity.  I have had PVCs since my teens (I'm 55 now).  I started having them almost a year ago and they were non-stop to the point I felt like it was hard to breathe, especially while doing anything physical, even walking.  I was so anxious and depressed.  I had all the testing done, and they said everything was structurally normal and not to worry.  My Holter monitor showed close to 4000 a day.  I know many people have a lot more than that but I have pretty severe anxiety disorder also, and it was way too much for me mentally to keep having them.  

I went to an EP who said if I was that symptomatic he would do an ablation, so I did.  I had more than one area where the PVCs were coming from but he ablated the 2 areas that were causing the most PVCs.  I still have them daily but not even close to what I was having before, so I am very grateful; however, my anxiety is worse than it was before!  He said that it is common to have anxiety after because people are waiting for the other shoe to drop and waiting for them to come back.  I'm not sure if that is it or not but I am in a serious anxiety state and have been.  I'm just trying to hang in there hoping things settle down.  I feel like it's one thing after another and it gets to be too much.  

I will by praying for you to get some answers that make you feel better and get in a more peaceful place about all of this.  I know it can be overwhelming, and sometimes we have to be ok not having all the answers, but it isn't easy.  
1 Comments
Thank you for your response! Sorry for the delay in responding
You said something that just hit me “waiting for the other shoe to drop” - that’s so true. I really am!! I spend my days feeling like a ticking time bomb.

So with all those PVCs did you also have runs or were they just single PVCs? I wanted to get an ablation but my doctor told me as of right now I wouldn’t qualify because it would be like finding a needle in a haystack. Not that I really want surgery but I can’t deal with this. I had another run today and broke down. I only take a beta blocker so I feel I’m really not doing anything to protect myself which I think causes a great deal of anxiety on its own. But then again with ventricular issues there really aren’t that many options.
Avatar universal
I had PVCS for years in 2014 I had  ABLATION  and fixed it.  last summer I started to ride a bicycle 60 miles a week and started having PVCS I stopped riding went down to small amount of riding and  no more PVCS the first thing my doctor put me on Metoprol bad med. I stopped taking it my doctor was not happy when I stopped I did was fine when  I went back he seen no PVCS so he agreed I did not need the meds. you know your body more than any body else Good Luck Anthony
1 Comments
Thanks for the response!
So did you also have runs of NSVT or just a ton of PVCs? I actually take toprol xl and it’s been ok for me but I know medications can be different for everyone. I would have an ablation but my doc doesn’t think he will find it due to the frequency and what’s happening.
Avatar universal
Thank you for the responses!
Avatar universal
The most I had was maybe 3 or 4 in a row, which felt weird but otherwise I was having them every few seconds.  The ablation was not that bad really, although I was awake and knew what what was going on the whole time.  I almost wonder if that was more traumatic than I think.  I was over the top anxious for weeks before and then being aware during the procedure, maybe it was just harder on me than I think.  I should be so relieved not to have them anymore and more calm so I don't get it.  

I wonder why they can't ablate yours?  They try to induce them with adrenalin and I had a million sensors or whatever stuck all over my chest and back so they knew exactly where they were coming from.  I'm sure it's way more complicated and its probably not the same thing as I have.  

I really hope you find more answers and peace about it.  I know it's hard to feel like everything is going to be ok when you don't really trust what's going on.  I wish you the best

1 Comments
Thanks for your response!
An ablation is no Joke from what Ive heard so I totally understand why you may have a lasting impact from it! I know the thought of one scares me. And yeah my EP just said because it’s infrequent although I’ve now had it three times in a month that he most likely wouldn’t be able to find it. He really doesn’t seem worried about my runs even though I’m completely terrified. I am getting two second opinions in September so it will be interesting to see what they say.
Avatar universal
No I did not have NSVTS but the first time my Doctor said the same he most likely he would not find the PVCS as they got worse in did the Ablation and found it very fast it was on the back of my heart. I think it is worth talking to your Doctor again stay well Anthony
Avatar universal
The EP's have probably seen so many patients with much more serious issues than ours so they know it's nothing to be concerned about, but it feels so scary it's hard for us to ignore it.  Hope you find answers in September.  Keep us informed!
Avatar universal
You don't have to be awake when having  Ablation I was  not did not know what was going on  you must ask to be put to sleep. Anthony
3 Comments
I asked if I would be awake and I was told several times before the procedure that I would be given enough sedation to be happy and unaware, but on the day of the procedure the nurse said they wanted to start out with very mild sedation because whatever sedates the brain also sedates the heart and they needed me to be having the PVCs in order to see where they were coming from.  I wasn't exactly happy about that but I wanted it to work so I figured I would do whatever they said.  The procedure was really not that bad but just a little scary knowing what they were doing and actually feeling the areas being ablated!  Glad it's over
I don't know were you live  I am in South Carolina  I was  fully asleep as I was scared to death . Anthony
Washington state - I was scared too.  I think that's why my anxiety has been so bad since I had it done.  Hopefully it will taper off once I trust that it worked and I'm really ok lol  
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