Many symptoms and Thyroid/auto immune tests pos... - Thyroid UK

Thyroid UK

137,632 members161,407 posts

Many symptoms and Thyroid/auto immune tests positive

SLWS profile image
SLWS
12 Replies

I have never in my life thought so much could go wrong at the same time.

I have a TBI, which got worse with each of my two pregnancies, I had the worst luck of incompetent doctors not believing me for a long time, actually had me convinced I was making it all up until it was proven they were wrong, my thyroid symptoms went untested for over a year and the endo doctor was unimpressed at how long it took to see him, because I'd had nodules forming and one had to be surgically removed.

He recommended I never go back to previous doctor I was given Synthroid and it's been a battle back and forth over the years and my problems just keep coming.

I've got IBS, allergic to peanuts and soy (food allergy not anaphylactic) peanut slightly higher, dairy intolerance, constipation, high blood pressure, bad circulation, I feel a small though I'm completely depleted and the mere thought of even getting out of bed in the morning is enough to make me feel physically exhausted.

My hair falls out, I've suffered from being so overheated at all times I can't even sweep my floor without sweating. I have a thermos if I've water with me at all times and it's refilled constantly, my sense of taste and smell is so powerful I can literally know exactly where the source is and others don't even smell it until I point it out, often not even then. It gets so intense I get nauseous and get physically weak if it's too loud or powerful.

I have sensitive skin, the last year or so my heart and pulse, and chest pressure becomes overwhelmed over the smallest of things and it's debilitating by way of controlling.

I can't even go to the gym and work out because immediately upon physical activity these issues begin and promptly become worse. Imagine, as I get low blood sugar often, the effects that follow from bottoming out, that is similar to what I ho through.

I am unable to take a walk around my block without running out of breath, sweating and feeling so hot my body trembles and I cannot stand as I'm so dizzy and I feel nauseous and even drinking ice water does nothing to calm things down. Actually I'll get dry heaves and my stomach will start twitching and my IBS will kick in.

It's so overwhelming that even when I rest to feel better it takes a good amount of time to get to breathing and feeling not out of breath. The experience will exhaust me for days.

I've been told by doctors that they know something is wrong and they feel it's more than one thing working together and yet nothing is concrete.

I have lost track of my initial symptoms because they were initially neurological and attributed to my TBI and the severe complications my 2nd pregnancy brought to the surface as it was explained getting pregnant often causes underlying existing conditions that may or may not have eventually become problematic. Until my horrible experience started 13 years ago I was in no medication, saw a doctor a son needed, felt great, my life was literally go go go... nobody understood how I managed but my motto was when others said WHY, I would say WHY NOT!..

I was a PTO member, soccer mom, worked full time, a single mother, daughter had dance, ballet, Girl Scouts, I was the troop leader, volunteered at the school, always with friends and I was healthy and happy.

With the dude effects of medicine today and considering I take

I take Linzess, miralax, Synthroid, Effexor, welbutrin, adderall, klonopin, Ambien, lisinopril/HCZT, for the variety of problems, I'm fairly certain that some of these problems could have been avoided.

However, I'm left to wonder if my TBI, which as confusing as it may sound I'm not educated as to the exact effects it causes as the hospital I went to cannot seem to even read the results accurately and my specialist who finally gave up on the place are all gone and I'm left in the balance.

I have right frontal lobe damage I was in a coma and defied all odds of making it through. I was 10 and my brain adapted until my 2nd pregnancy and nothing I mean nothing has gone right since.

Does anyone think my TBI may possibly be tricking my body from proper blood results? I'm so desperate right now and mh doctors nurse notified me Friday that the many blood tests I asked him to run on me my auto immune part was not normal but no further info was given.

I went to my personal chart online and my lymphocytes monocytes and basofils are high but the neutrophil is low. However for all I know that may not be significant by way of explaining any of my problems.

If anyone has any suggestions as to if my thyroid is the issue of my brain malfunction is making stuff up but still making the symptoms real to me or if there are suggestions of results coming back within the wide range of medical normal but still an indication of concern.

It seems my body is at a plateau and my digestion issues often swell my stomach to become as swollen as 6 months of being pregnant and I eat very little yet I cannot lose weight.

I eat to live I don't live to eat.

I overcame both eating disorders, overcame nearly killing my organs, through therapy I went from begging for diet pills at 108 lbs. ordering diet pills from another country, getting ripped off of hundreds, I was contacted by board of customs because they intercepted my illegal order, worked to be comfortable at 150 lbs and now I weigh 180 lbs of swollen and uncomfortable weight that is unexplainable and won't go away.

I'm considering plastic surgery for my stomach area but don't know if it will work.

Somehow I feel there are others out there who are experiencing the same as I am and perhaps they were lucky enough to have a doctor who listened and found them answers.

Or even if my story helps someone else realize they aren't crazy and then aren't alone even if it seems like their many different symptoms are not possible to happen to one person at the same time.

I had eclampsia with both pregnancies and as weird as it sounds my symptoms after the second one did not subside as doctors expected. I'm also on SS disability because of my TBI.

I'm turning to essential oils as we speak and just waiting for then to be delivered.

I'm willing to try anything and everything to feel better. My life is a very bad rerun and I'm only 39.

Thanks for any suggestions and for just taking the time to read my message.

Written by
SLWS profile image
SLWS
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Heloise profile image
Heloise

Hi SLWS, what a tragic story and tragic aftermath. The tough part is that you try to endure while doctors are doing very little to support or help you. This is a big club when it comes to chronic illness. It sounds as if you have multiple chemical sensitivities but I really wouldn't begin to figure out what is going on with you. Some of those meds are adding to your toxic load. I've just listened to this program that deals with toxins and you might possibly get some ideas.

You have an autoimmune condition and they are finding several antibodies in the brain as well as the regular thyroid antibodies. Have you had antibody testing or Elisa tests?

If you have time to watch this, it is part 4 of a 9 part series. Each segment will only run for 24 hours but this one will remain until tomorrow.

thethyroidsecret.com/episod...

SLWS profile image
SLWS in reply to Heloise

Thank you for your response.

The awesome fact about this whole situation is that the tests I had listed for my doctor to run all came from this site and my appointment was on Tuesday and I only discovered this site itself the week prior.

I know that I have access to my test results and most I don't really know but my results are shown and many don't have the normal range results listed.

I'll try and watch the segments you suggested but I'll be totally honest I get confused trying to sort the stuff and I often feel more hopeless because I have no outlet to cross reference or seek immediate answers and therefore I'm totally powerless to try explaining to my doctor why I firmly believe it's possible they have me in meds I don't need which is probably causing needless side effects r that I'm not on the right ones because they aren't testing right and believe me I'm used to that questionable look they always give me and my luck with the doctors being proved wrong and negligent has been no favor to me as their spite and anger heightens.

But I won't know if these segments will be beneficial and not the same as previous research attempts if I don't try to watch one or more and considering everyone involved this page is watching and recommending others to do so really says a lot.

Thank you and I'm crossing my fingers and toes!!!!

❤️

Heloise profile image
Heloise in reply to SLWS

I think the series is well thought out and somewhat repetitious so that will help. You're so young, I'm sure you can improve your condition. The brain injury at age ten must have been an awful set back but you did well in spite of it. The second pregnancy must have put your hormones over the edge and lots of things catch up with us as we near forty. They mention antibody testing and Elisa testing to find out what sensitivities you have.

If you can find out which lab was used for your hormone tests, maybe we can get their basic ranges. Stop the Thyroid Madness lists some of the pertinent tests.

They talked about LDN in Episode 3. I heard about it ten years ago and thought I might like to try it. It's an immunoregulator I think that's what they called it. Back then I didn't realize my hypothyroid might be autoimmune. It was discovered that LDN would specifically work on autoimmune. I wonder if your doctors would consider it since they have told you that your results were abnormal. LDN stands for low dose naltrexone.

If you post your other results someone else may use the same labs and know the ranges if you're in the UK.

You can cross your toes???? ha ha

SLWS profile image
SLWS in reply to Heloise

Thank you very much.

My problems actually started during my 2nd pregnancy at 27 and have remained.

I sure hope considering my near 40 mark things aren't going to get worse as you stated.

I don't think my poor body can handle anything more lol...

I keep hearing from seniors that don't believe that retirement is your golden years because it's not. They say by the time you get there everything is broken and life is an undesirable reality of sickness, medication, doctors, and feeling lousy.

I think I've aged 20 years in 5 already.

Heloise profile image
Heloise in reply to SLWS

Well, I'm a senior and went through so many issues after becoming hypo without realizing they were all related to autoimmune attacks. That's why I was hoping you could try LDN. It may not work for you as nothing works for everyone but the other option is to work on your gut. You need to stop all sugars and refined foods and then there is gluten and dairy. In between that you absolutely need to meditate and bring about the relaxation response (a real thing) twice a day. It's a difficult route but some have done it and were rewarded.

So I have not done all of that and yet I still play golf pulling my cart in up to 85 degrees. It takes a bit of stamina. Your body always is trying to heal no matter how badly you feel. Try to get off the medications. There are supplements that better without the side effects. This doctor has videos on almost any body function and is brilliant in my opinion. I usually post his Healing the Thyroid but this was is on autoimmune and might even be better. He talks pretty fast so you might not catch all of it but it will give you the general idea. youtube.com/watch?v=IdSeqUW...

SLWS profile image
SLWS in reply to Heloise

Thank you very much your advice I'm going to start.

silverfox7 profile image
silverfox7

Welcome to the forum. I can appreciate you don't know what to do next! Sometimes if we are sent down the wrong track we can get very confused and very lost and the possible 'wrong' treatment can make things much worse rather than better. You say you have had a thyroid problem for 10 years so I think it's best that we start that as a new journey with you.

Doctors don't always realise that such a lot of symptoms are down to the thyroid. It you look of the Thyroid Uk site I'm sure you will be familiar with many of the symptoms and I suspect some of the symptoms your doctor may be trying to treat as something else! That happens a lot!

So if you have any recent labs for thyroid, iron panel, liver and kidney and any vitamins and minerals all with their ranges as these differ from lab to lab then I'm sure we can help.

The thyroid affects every cell in our bodies so a good thing if we can get that on the right track and then expand from there. Those results may also suggest what to look at next but it's not going to be overnight results but it's going to take time with more adjustments to make along the way as hopefully things slowly improve and hopefully you start to feel better. As you are pretty complex I would advocate taking it one step at a time so as not to confuse the issue and then it's much easier to see what is working and what still needs addressing or not quite right yet.

But start with your thyroid and I'm sure then we can advise what to do next.

KateMD profile image
KateMD

I have almost the exact same symptoms postpartum, especially the over heating with any exertion. It's terrible! I would reccomend charting your morning temp to see what your thyroid is up to. I'm curious what other will say so I'll be following along.

Marz profile image
Marz

How many of your drugs are working against your thyroid and the treatment ?

shaws profile image
shawsAdministrator

Welcome to our forum and I'm sorry you are still very unwell. I will give below a link by an American Doctor who resigned his Licence in order that he could treat patients as they deserved and would never prescribe levothyroxine/synthroid. He died through an accident but some of his work his archived and I'll give you some to read through. He would only prescribe a 'natural dessicated thyroid hormone' which contains all of the ones a healthy gland would produce, i.e. T4, T3, T2, T1 and calcitonin and is from pigs or cows thyroid glands. He also prescribed T3 for his thyroid resistant patients. Adding some T3 (liothyronine which is the only active hormone our receptor cells need). T4 (levothyroine) is inactive and it's job is to convert to T3 and we may have difficulty doing so, or dose is too low to provide sufficient T3. Our brain contains the most receptor cells and the billions of receptor cells in our body needs T3.

Blood tests for thyroid hormones should be the very earliest, fasting (you can drink water). Also allow 24 hour gap between last dose and test and take it afterwards.

A Full Thyroid Function test should be T4, T3, Free T4 and Free T3 and thyroid antibodies.

You should also have B12, Vit D, iron, ferritin and folate tested as we can be deficient too.

web.archive.org/web/2010112...

MariLiz profile image
MariLiz

Unfortunately, a lot of us with thyroid problems also have other autoimmune conditions. This could be something that is happening to you?

Has your doctor tested B12, ferritin, folate & VitD? You also need a full thyroid function test, that is TSH ( thyroid stimulating hormone), T4, T3, reverse T3. Others on here will know more than me on these tests.

I have found my B12 was low enough to need treatment, I have also been told I have fibromyalgia.

I hope you will find a doctor who will help you discover what is making you so unwell?

Best wishes

MariLiz

SLWS profile image
SLWS

I got my results from a few more tests today online and my head was 1 (again no idea what that implies but my chart stated it was reported to the Health Department 😕)

And my ANA SCR MILTIPLEX WAS POSITIVE

I don't know if the Leucophils and basophils and the neusophils results are related but somehow I am relieved something seems to have come back annormal.

I am reserved however because with my luck none if these results will be relate to my issues and once again my doctors will tell me it's mute and I'll feel even more helpless in managing my own body.

You may also like...

Auto immune thyroid disease?

excludes these for past 6 months which def makes me feel a bit better. Not sure where to go with...

Levothyroxine and ovulation, plus general knowledge on auto immunes

hyperthyroidism can cause pregnancy loss and also prevent implant so levothyroxine may help get...

Hi new to this site and newly diagnosed auto immune thyroiditis.

in 2 months. This seems to go against everything I'm reading which suggest 6 to eight weeks being...

Thyroid Symptoms with normal blood tests

have all the symptoms of mixed hypo and hyper thyroid including voice changes but every time I do...

So many symptoms & genetic history but tests say I'm normal?

fully understand at the time but she said it looked like my body may be making extra of something...