How long?

[leo1807]

I hope I don't write too much, but my life is just miserable and I need help/insight. I am fully convinced that I am hypo. I'm 26 and used to be 115 lbs with long, thick, curly hair, great skin, tons of energy....as a matter of fact I joined the military (US Army) and was more than able to keep up and compete with the guys. I had perfect pt scores and did 700-1000 situps a day just for fun, would go hiking for 5-10 miles with 35-40 lbs of gear in the 100 degree heat and feel wonderful.

All that changed when I got pregnant (as it naturally does). But it got even stranger-up until I was about 25-26 weeks pregnant. I was still in size 3 jeans (not sure what size that would be in the UK, but very small) and it was just like it changed overnight. I started gaining weight, got gestational diabetes, started losing my hair/eyelashes/eyebrows, and had symptoms of preeclampsia. My Dr pretty much just said "Oh, weird." and told me all about gestational diabetes.

My daughter is now 16 months and I still feel awful. I have been discharged from the Army due to planters fasciitis which is so debilitating that I can no longer run, ruck march, or even stand for more than a few minutes without legitimate crippling pain. I have a legitimate foot issue, but it has gotten so much worse since all this started. I also have neck/shoulder pain that has gone on for about a year now. I attributed it to an old combatives injury but now am not sure, as it sounds like it could potentially be due to hypothyroidism.

Of course, on top of this, I am just exhausted. I am a stay at home mom now, but I don't have the energy to keep up with my daughter and my husband doesn't understand why I can't just clean the house. I try but get tired so quickly, on top of the pain from standing/walking around. I sleep for long periods of time, when I can finally get to sleep, but I feel no better. I'm gaining weight- I'm up to 155lbs now, 40 lbs from before I got pregnant. Of course I realize pregnancy can cause weight issues; but I don't have the energy to work out. I used to be so strong, but I can't even carry my daughter up the stairs without getting out of breath.

My beautiful hair essentially turned to brittle straw. I had to cut it off to about my shoulders, but it is so thin and dry. It is falling out in heaps and I have bald spots, plus a nasty dry scalp that is somehow oily at the same time. I still have not regrown the majority of my lashes or brows. My skin is so dry and my face is breaking out, which didn't even happen as a teen. My periods are long and awful, as opposed to the 3 days I used to have.

I had MASSIVE depression after the birth of my daughter, which didn't begin to ebb until recently, though I would still consider myself heavily depressed. The Dr's just gave me depression meds, which seemed to work for a while, but then stopped. My temper has exploded, where I used to have next to none. I fly off the handle unexpectedly and it is so difficult to control, though I do so most of the time.

In addition to all of this, I have multiple large goiters which were discovered halfway through my pregnancy. They have now grown and have altered my voice and are affecting my ability to swallow. They are sometimes painful, and if anything touches my neck I feel like I am being choked. I had a biopsy done on them a year ago that came back negative for cancer, so that's a blessing.

Unfortunately, my Dr's didn't really listen to any of my concerns. They asked if I had any family history of thyroid issues, and I said no. They discounted me after that and said they would do a "base test for hormone levels" whatever that means, but I came back within the normal range. That was over a year ago though, and things have certainly got much worse since then.

Since talking to my Dr's over a year ago, I have discovered that my maternal grandmother had her thyroid removed due to hypo/goiters, my paternal great grandmother had hers removed for hypo/goiters, and my paternal grandmother is hypo. If I had known this I feel certain that they would have listened to me and taken me more seriously.

I'm getting put under my husband's insurance soon, so I will be able to go to doctors other than military doctors and will tell them all of this, but I am beyond terrified that they will tell me that everything is normal and that I'm just fat/lazy/ugly/angry/sleepy/sad. I cannot live like this. This has completely ruined my life. It ruined my career (I'm now unemployed, having difficulty finding a job), put a huge strain on my marriage, is affecting my relationship with my daughter...I can't do the things I love anymore, like exercise, and if it weren't for my daughter I honestly wouldn't even find a reason to go on living like this anymore. I am that miserable.

Please, someone give me a success story. How long did it take from diagnosis to when you got meds? And how long before those started working? Did you get your energy back? What about your mood? Hair/weight? PLEASE tell me my life can get back to normal. I'm 26- I can't live a whole life like this.

And if this doesn't sound like hypothyroidism, maybe someone could point me in the right direction. I just want help.

[humanbean]

I just need to point out that I am not a doctor, and I live in the UK, so I may make some comments which don't work for your healthcare system.

I think hypothyroidism is a very good possibility for what ails you. In women it tends to strike at times of massive hormonal change - puberty, pregnancy, and menopause.

In an ideal world you would want to get the following tests and checks done :

1) An ultrasound of your goiter(s). You need to know if there is anything suspicious going on - any nodules or tumours. If something comes up that is bad news, don't be in a hurry to take radioactive iodine to kill off your thyroid (which I've read US doctors are particularly happy to do), or rush to get your thyroid removed. Thyroid cancer is generally a slow growing cancer, and you will have time to do some studying of your options and get a second and third opinion. Doctors are way too quick to get rid of you by removing your thyroid and then tell you you are going to be fine, here take this little white pill every day for the rest of your life and don't bother coming back.

2) You need to get your TSH, Free T4, Free T3, and thyroid antibodies tested. If you can get Reverse T3 tested too, that would be very helpful. Total T4 and Total T3 are often tested in the US but aren't particularly helpful. T3 Uptake gets tested too, but I don't know anything about that particular test, I've never heard of it being done in the UK.

There are three different types of antibody that can affect the thyroid, and you will find them listed here :

labtestsonline.org/understa...

This link lists them all, read the whole page. The ones that are relevant to you are likely to be TPOAb and TgAb. From what you say there is no obvious signs you have hyperthyroidism, so TRAb/TSI are unlikely to be relevant. The results of your thyroid function tests (TFTs) will make things clearer in that respect too.

If you have any kind of thyroid disease it is likely that you have deficiencies of many vital vitamins and minerals. You need to ask for tests to be done of :

Vitamin B12, Vitamin D, Ferritin, Folate, a complete blood count, and, if you can get it, a full set of iron tests too.

labtestsonline.org/understa...

Being told that any of the above test results is "normal" is not enough. You must make sure you ask for a copy of any blood test results, including the reference ranges, from now on. Keep a history, and note down with any set of tests what medication and supplements you are taking, what symptoms you have, and how severe they are. That history will help you in the fight to get better.

Regarding your temper, I'm going to go off on a tangent here. I am hypothyroid but I have never had any positive thyroid antibody results. I have also been tested for coeliac/celiac disease and that was negative too. I often read that giving up gluten is essential for anyone with thyroid disease because it damps down antibody activity. I never bothered to do this because of the negative antibody and coeliac tests I had. However, in January of this year I finally did it, and I have done it 100% religiously. I didn't get any improvement in my gut at all. But much to my surprise my almost uncontrollable temper, which had been getting worse for many years, and which used to scare me in case I ever lost total control... it vanished within a week. I also have/had balance problems, and giving up gluten reduced the problem a lot. (Taking B12 supplements also helped enormously with my balance too.) My temper was so bad that when my husband realised how much it improved when I was off gluten he became better than me at remembering to check what had gluten in it (which is rather embarrassing!)

I have also had plantar fasciitis - in my case it was a late onset hypothyroidism symptom for me. Increasing my T3 levels fixed it very quickly.

Summary : Get as many of the tests I mentioned done that you can. Make sure you get the results and the reference ranges. Come back here, create a new thread, and post your results. If your insurance company won't allow all this testing to be done, then it is possible to do them if you pay out of pocket. Hopefully some US people will pipe up and tell you how it can be done.

There is lots more to learn, but you are just at the beginning... You can get better.

[humanbean in reply to humanbean]

I forgot to say...

When getting blood tests always have them done first thing in the morning, and definitely before 9am. Don't eat or drink for 10 - 12 hours before the blood draw, apart from water. Dehydration and over-hydration can both affect blood test results so drink a sensible amount.

If you end up taking thyroid medication of any kind then don't take the meds for 24 hours before the blood draw, instead delay taking them until after the blood has been taken. Be aware that doctors sometimes like to spring surprises on their patients e.g. let's test your thyroid this afternoon etc, try to avoid that. Time of day affects thyroid function tests a LOT and doctors use the results to increase or decrease meds. This is why you must do your best to control things in your favour. I don't think anyone can force you to have a blood test against your will.

If you start supplementing, be aware that iron supplements need to be stopped for 5 - 7 days (some people say even more) before testing. Vitamin B12 levels are skewed by supplementing so once you start it can be difficult to get a realistic level. So, try and get a test before you start. Other supplements need to be stopped for different lengths of time, but I'm not sure of the recommendations for other things.

[Clutter]

Welcome to the forum, Leo1807.

I'm sorry you are feeling so dreadful and devastated. Hypothyroid symptoms often precede abnormal bloods. Things will improve when you finally have a diagnosis and are optimally medicated.

'Normal' is a broad range. Can you post a copy of your thyroid results and lab ranges (figures in brackets) to help members advise?

thyroiduk.org.uk/tuk/diagno...

[leo1807]

Sorry everyone, I don't have any results to post. Military doctors are very cut and dry (at least mine were), and they just did a low level "hormone check" and said they were normal. They said that there were other tests that they could check into (I'm assuming all of these hormones/other levels mentioned) but said they wouldn't do it if I had no family history. They just said "Nope, don't got it. Normal." and I never got a copy.

In response to the reply above- I had an ultrasound done shortly after I delivered my daughter, and a biopsy shortly after that. They seemed concerned but didn't really say much about it, other than it could be cancer but probably wasn't, and if they weren't bothering me (at the time they weren't) then they would just leave them. As I mentioned earlier, the results from the biopsy came back negative.

They are affecting me now, though...I went to the Emergency Room around February of last year due to a panic attack (which I've never had before...though I am sure that it's a culmination of many things) and the first thing the nurse said when she walked into the room for me to fill out paperwork was that I needed to get my thyroid checked, because she could see it from there.

I just want to be strong and healthy and happy again. That's all.

[Jazzw in reply to leo1807]

Could you request a copy of your blood test results? Have you ever tried to get them?

A quick Google brought up this: tricare.mil/Resources/Medic... which probably isn't relevant to you, but seems to suggest you ought to be able to get hold of something. Maybe given you're about to switch to your husbands healthcare package it seems reasonable to ask for your records so your new doctors have them?

[fern123]

Hi I am in a very similar position to you and live in uk. I now have extreemly painfull feet which again I think is planta f also extensive hair loss, depression, tied all the time and a recurring itch down below which I have been told is not thrush. I had surgery in January for carpel tunnel in both hand which just seemed to arrive overnight and now my feet. I had blood test approx. 1 year ago and told my thyroid levels were ok but again I feel my symptons like your are thyroid linked. Has anyone got any advice as I am really struggling with this.

[Treepie]

Without test results and the ranges it is impossible for the good folk on this forum to comment.

[leo1807 in reply to Treepie]

All I want to know is whether or not it can get better. Surely someone can comment regardless of range..

[humanbean in reply to leo1807]

If your problem is hypothyroidism, then yes, with the correct medication it can get better. If you get prescribed levothyroxine then 80% - 85% of patients do very well on it, and go on to live very normal lives. If you are one of the unfortunate 15% - 20% then you can still get better, it might just take a bit more effort. Hypothyroidism is not a hopeless disease, nor a death sentence, particularly if you are prepared to put the effort into learning about your condition and finding out what you can do to help yourself on top of taking meds.

Edit : I should have said that hypothyroidism can't be cured, but it can be managed, and many people live quite happily despite having the condition, once they are properly and adequately treated.

[Jazzw in reply to leo1807]

You asked:

"Please, someone give me a success story. How long did it take from diagnosis to when you got meds? And how long before those started working? Did you get your energy back? What about your mood? Hair/weight? PLEASE tell me my life can get back to normal. I'm 26- I can't live a whole life like this."

Many people recover very quickly once on an optimal dose of levothyroxine (within a few months of first diagnosis). Those people don't tend to go looking for answers on the Internet so never find us or read posts here.

Almost by default, the vast majority of people reading and posting here haven't got a straightforward story of recovery to share with you. The people reading and posting here often have more complicated and frustrating stories to share - tales of misdiagnosis or undermedication. That said, there are many here who once had very complicated journeys back to recovery who have now recovered fully or are well on their way because of the support offered here.

As Humanbean said, yes, it can get better. With the right treatment and a fair amount of tweaking, you should get back to feeling more normal in time.

[leo1807 in reply to Jazzw]

That is a good point; I know that most people with success stories just tend to live their lives without Googling and searching forums, etc, I guess I just had a moment of weakness today. The waiting is killing me more than anything. Thank you all for your responses, it has helped me a good deal. Especially the diet advice mentioned earlier.

[Clutter in reply to leo1807]

Leo1807, it can, and does get better for most people.

This thread was only recently started but there are a few success stories healthunlocked.com/thyroidu... and here thyroiduk.org.uk/tuk/get_in...

[Treepie in reply to leo1807]

I think I picked up halfway through the string,sorry. It took me about 12 months once on T4 to feel about 90% better.

But as the other more knowledgeable folk than me have responded in detail do post your results when you get them.

[SilverAvocado]

I think in the first instance you must get to a doctor and start getting these blood tests. It's scandalous that your previous set of doctors allowed you to be removed from your job because of illness, but didn't give you any clue what that illness was! Once you have got the ball rolling on diagnosis and treatment you should be seen 3 or 4 times at least to monitor your doses. And as others say, there's a good chance you will get back to close to where you were before within months. In fact I always find I feel some improvement within days.

Also I think you want to know conclusively that the nodules aren't cancer. I've had thyroid cancer and in my experience you keep being told "this probably isn't cancer" until the final doctor in the chain. Please don't worry too much, because the chances are still very low, and even if it is you won't be any worse off than you are now, you will just have to have them removed. So that would probably be an ultrasound scan and a fine needle aspiration.

[leo1807 in reply to SilverAvocado]

I have the fine needle aspiration biopsy as well as an ultrasound. This was a while ago and they have grown since then, they also only tested the largest one but it came back negative.

[MariLiz]

A friend's daughter had the same thing after she had her last baby. It took her two years to find a doctor who would take her symptoms seriously. They just kept telling her she was depressed, of course she was, because she felt so ill! Anyway, once they began to treat her thyroid condition she got much better, and is now a happy mum, holding down a new job! So good luck with getting your's treated. MariLiz