Raised antibodies - but experiencing symtpoms?

[Lotus266012]

Hi there

I'm a 28 yr old female and I’ve been having difficulty swallowing.
I had a blood test to check for thyroid antibodies and my levels are raised but because my TSH is within normal range I’ve not been put on any medication.

The doctor wants my TSH checked in 6 months along with thyroid antibodies and maybe consider medication but I’m worried because this problem I’ve had has been going on for over a year now.

I don’t know if I should go back to my doctor when more symptoms develop because this has been a shock for me since I was registered with previous doctors who gave me the impression I was imagining it. They didn't run a test for thyroid antibodies and told me a thyroid condition was ruled out so to be told that I was right to be worried and that something is going on inside gives me closure.

My symptoms are:

Swallowing – it’s worse when I eat something hard and don’t chew it enough although it happens when I eat something soft but a lot of it. The food goes down but it “hits” something on the right side of my throat and its transit slows down. These times are when I purposely hold my breath in case it goes down my windpipe.

Goitre – I had a major episode of goitre in the past, but two nurses I’ve seen noted I look as though I had one at the time I was told by my doctors nothing was there.

Swollen area on side of neck – I’ve noticed the right side of my neck feels firmer and bulkier than my left.

Pain – I get sharp pain on the right hand side below my neck and around my clavicle, pain on the right hand side of my chest that occurs in my ribcage and behind my breast, pain in right hip/groin area that comes and goes and pain in my shoulder blade that extends into the upper back. Once the pain slowly migrated down my back.

Headaches – I’ve had more headaches on the right hand side. They’re not painful but because I don't get them that often they bother me.

Breast tenderness – I get the occasional twinge behind my right breast but for some reason it feels more tender and swollen than the left. It doesn’t look swollen or abnormal but I never used to get this between my periods.

Fizzy feelings in right leg – This affects me when I’m awake in bed and I also suffer from Raynaud’s, which the doctor guesses is causing the fizzy feelings. I’m not sure as with Raynaud’s my fingers and toes go numb and feel like they’re being hit with needles. With the fizzy feeling it’s as if I’ve got growing pains in my calf.

Digestion – I get bad constipation. It isn’t as though it hurts but I have to strain to empty myself and I get this frequently. I get the urge in my bottom that I need to go. It doesn’t matter what I eat, what I do or what time of day it is I get it daily.
I had one instance of diarrhoea where I made about three trips to the bathroom in five minutes so I don’t know what that was all about.

Nausea – I’ve had instances where I’ve felt sick. I never vomit but when you get the feeling where you feel sick to your stomach that was it.

Sleep – I get around 10 to 11 hours sleep but when I wake up I don’t feel I get that much so I stay in bed and sleep for a few more hours if I know I’m able to drop back off. If I know I can't go back to sleep then I get up.
More recently I’ve found it hard to go back to sleep in the mornings even if I feel tired and this includes waking during the early hours.

Muscle twitches – I get twitches in my right thigh as if the muscles are flickering. It bothers me a lot and happens more when I’m sitting down.

Period pain – I thought by the time I was in my early to mid-twenties I wouldn’t experience as much period pain as I did. Unfortunately it’s very rare I start my monthly bleed without so much of a twinge but give it another hour or so and then it intensifies. Sometimes it hurts all the way through the five days and others the pain goes and returns within a day.

I’ve read it’s ideal to take painkillers a few days leading up to a period but as my cycles start anywhere between a week early and three weeks late this is hard to manage.
Sometimes a day or two before a period starts the pain moves from one side of my lower abdomen to the other as if my body can’t decide which side the cramps should occur. A few more hours after it makes its mind up and the cramps then happen!

Periods that come and go as they please – I used to be on a regular cycle of 27 days from when I was 15 until I was 25. Now my cycle’s shortened to 21 days and they come and go as they want. If I’m lucky they’ll start on the day I predicted them to but most of the time they come early or late.
Some of the times I’m on the last day of a period (or so I think) the bleed stops and I take my pad out thinking that’d be it for another month only to find that when I change my underwear the bleed picks up.

Vaginal discharge – I get an increase in thick white discharge – and this is even before I’m due to ovulate. My area doesn’t itch or look swollen and I don’t get pain but it’s confusing as to why I get this as I can’t work out whether it’s cervical fluid or if it’s from when I’ve ovulated early.

Weight – Difficult subject for me to talk about is weight. The reason for that is mainly because I’m petite and I never used to be able to put on any weight despite what I ate. If I so much as eat what I would in a normal day now I would gain around 3 or 4 inches around my middle. Of course because of my height the weight gain isn't visible but my weight is now fluctuating with me going from gaining weight to losing it.

Breathing – I don’t know if it’s because of me sleeping on my side in bed but I’ve noticed that some nights I feel short of breath. Not to the point where I’m panting but as if I need to take in deep breaths. Sometimes I breathe air out through my nose noisily as if my nose is blocked.

Palpitations/throbbing in neck – I’ve started to notice that the front of my neck throbs in time with my pulse. I don’t know if that’s normal.

Sore throat – I get regular occurrences of sore throat that come and go.

Skin – I thought by the time I was 25 I would stop getting acne but for some reason I’ve got more. My skin gets dry, flaky, oily and sensitive and I’ve used all sorts of things to get it as clear as I can.
I’ve used Aveeno, E45, exfolliators and cleansers that only contain natural ingredients. Anyone would find it frightening as to how much of these I’ve thrown away because they haven’t worked very well. I’ve also started to get spots on my neck.

Mood – Most of the time I’m depressed. I guess my behaviour is more pensive. I have a short attention span, I don’t concentrate well or for very long, I get anxious and worry – mostly when I'm out and encounter strangers.
More recently however it’s more the opposite where I suddenly get overexcited.

Appetite – I used to eat a lot but due to the difficulties in swallowing my intake has lessened. That doesn’t mean I don’t want to eat but I feel put off because I worry about the pain or the odd piece of food going down the wrong way. There was one night where I didn’t eat a curry as I found the meat and rice quite dry but I was happy to eat a whole packet of crisps which I demolished in about two minutes.

So there you have it. As I say I can’t do much about this at the moment as the doctors have suggested I come back in 6 months for a repeat blood test and if I tell them of all of these symptoms it might cloud the issue but they don’t seem to know what it is I have. What they do know is that my body is attacking my thyroid so whatever it is is autoimmune.

My questions are:

Is it normal to get symptoms with a normal TSH but raised antibodies?

Should I see a doctor sooner than 6 months?

Is it likely what I have will get worse within that time and if so how long will it take?

Is what I’m experiencing Hashimoto’s?


Any advice would be appreciated.


Thanks

[Barb135]

We need to see some lab results, in order answer most of your questions.  All of your symptoms can be attributed to hypothyroidism, but there are also other things that can cause them.

What antibody test(s) were done?  There are 2 tests you need to diagnose Hashimoto's.  Those are TPOab and TGab; if you've had those done, please post the results, here and be sure to include the reference ranges, which vary lab to lab.

Along with TSH, you should also have had Free T3 and Free T4 tested.  Those are the actual thyroid hormones, while TSH is a pituitary hormone.  We'd need to have the exact levels of all 3 of those tests, to be able to tell what's going on. Again, be sure to include reference ranges, since they vary lab to lab and have to come from your own report.

In addition, many labs use outdated reference ranges for TSH, so if yours is, your TSH could actually be over the recommended level.

Many doctors refuse to start treatment based on symptoms and want to wait until TSH is quite some (some want it at least 10), but by then patients usually have horrible symptoms.

If you have Hashimoto's, it's not unusual for symptoms to show up, long before TSH, FT3 and FT4 indicate a problem.  If you have a good thyroid doctor, s/he will start you on a trial dose of replacement hormones to see if helps alleviate your symptoms.  Hashimoto's is progressive, and if you have it, you will need periodic adjustments to medication, as thyroid function declines.

As noted, please post whatever thyroid labs you have, so we can get a better picture of your situation.

[Lotus266012]

Hi there thanks for your help.

I went to the doctor today to ask for the test results. Here they are:

TSH - 1.10 with normal range between 0.27 - 4.30
T4 and T3 were not done as TSH came back normal. Doctor also confirmed this was the case.
TPOab - 84 KIU/L

Thanks

[Barb135]

What's the range for the TPOab and did you have a TGab? Both are needed since some people have one or the other, some have both; and TPOab can be present in small amounts in other autoimmune diseases, as well.  However, an elevated TPOab would indicate Hashimoto's.

Many doctors only run TSH and they think that's enough, but truthfully, it's not.  It's entirely possible to have a normal TSH, with very low levels of thyroid hormones, and it's the lack of thyroid hormones that causes symptoms, whereas TSH does not cause symptoms. TSH is an "indicator" at best and should not be used alone to diagnose a thyroid condition.

For that reason, alone, I'd suggest that you either find a different doctor or find another way to get the Free T3 and Free T4 tests.  There are web sites online from which you can order them, they send you to a local lab for the draw, then send you the results in a couple of days. Some doctors will actually pay attention if you have results in hand; others won't.

[Lotus266012]

Hi there

I've got an appointment with my doctor next week so I will try and find out more about the results, as the ones above were given by a receptionist and they're only given so much information and can say so much at the time.

Ordering lab results online isn't a bad idea although it's more of a question of money. I guess if I find an afforable enough test I'll go for that.

Thanks