Unusual Thyroid symptoms? Am I alone?

[Nicole1027]

Hello everyone

I have recently been diagnosed with Hashimoto's and currently on low dose synthroid. I have been symptomatic for years with EVERY SINGLE SYMPTOM you can google on WebMD, Mayoclinic, EndocrineWeb etc.

I am at the point now where my quality of life is being severely impacted and if I don't get the correct treatment I may lose my job and forget about starting a family.

The two symptoms that are scaring me the most are severe drowsiness and chest/heart pain that occur simuntaneously. It basically feels like I have fallen into a comatose state that leaves me completely lethargic for the rest of the day. Truthfully it feels like someone drugged me or cast a spell on me.

So here's how it starts... I will be reading, cooking or whatever and then all of the sudden my head begins to feel heavy or empty with pressure in the center of my brain. It feels like someone took the end of a vacuum, stuck it to my head and trying to suction out my brain. I must immediately stop what I am doing and go to sleep. It is not a migraine or even a headache, there is no pain. It just feels like extreme pressure or very strong pull on gravity. Like someone is filling up my head with water via a water hose waiting for my head to pop.

At the same time the head issues start, my heart/chest begins to feel extremely heavy. I begin to feel and hear my heart beat. My heart is NOT racing but strong slow beats, and making my whole body shutdown. My chest becomes so heavy. It feels like I am laying on a floor and someone is stepping on my back forcing my chest into the ground. Honestly, I can't tell you if the problem originates from my heart or chest. I'm explaining the best way I can.

I've been tested thoroughly and my lungs are great, my heart is fine, I don't have high blood pressure or any other known health issues or deficiencies. I am assuming then that these symptoms are related to thyroid but they seem so extreme!!! I am posting because I desperately want to know if other hypothyroid patients are experiencing these symptoms specifically. Again I have all the other symptoms of thyroid as well but these 2 symptoms are the ones that are forcing me into despair and disability.

Eventhough my doctor diagnosed me with mild Hahshimotos based on small number of TPO antibodies I feel that I actually have Central hypothyroidism (aka secondary hypothyroidism). Unlike normal hypo patients my TSH is low (0.82) and my FT3 and FT4 are low normal (2.3 and 1.3 respectively) Has always been this way. Have always been dismissed as "normal" until now when a new dr. was bold enough to acknowledge my small number of antibodies. I just want to make sure I am getting treated properly and not barking up the wrong tree.

Any comments or feedback would be helpful. I welcome all thoughts and opinions on the matter. Thank you for listening!

[Looneytunes]

It sounds to me that you could be anaemic. Tiredness is a part of the illness but chest pains no, but the two do signify that you should get your iron levels looked at.

[Jump1]

What are your antibody levels

[Nicole1027 in reply to Jump1]

My level is 5 and the lab range is >9

the doctor says I have mild hashimotos and at the beginning stages. He says ppl who dont have hashimotos would have lab results that are in the negative numbers. Just 2 yrs ago i was in the negative numbers but still had the same exact symptoms i have now.

[Jump1 in reply to Nicole1027]

I think I may be similar to you: these are my results. only 1 dr so far has said I am heading towards hashimotos (the one who I am seeing next week, I have spoken to 4 other GPs, endo and 2 derms all said nothing wrong with my thyroid and it isn't causing my hair loss).

I have had stomach pain for same length of time as my biggest complaint hair loss. 6 weeks ago I was finally self diagnosed with h pylori had the treatment, had it retested, says there is no infection any more. I am finally I hope I really do hope seeing a good gp next week, he has agreed to do a ton of nutritional tests on me. he only agreed to see me because I said I was depressed and anxious for 2 years about my hair. he wasn't going to based on my tsh result anitbodies and my symptoms of hair loss, lack of sweating and low periods, (I have a ton of others prob minor enough)

are you getting treatment? This is all that is on my mind now. I go to work and when not occupied by something in it I think about my hair and test results and symptoms.

I am waiting on vitamin d results and hair mineral analysis- I am more than likely deficient in that, could pretty much guarantee it, I know how little of the sun I have seen this last 2 years. I hope to get the vit d results tomorrow from endo, I rang today they said they were back and he would look at them tomorrow.

Test Date August 2017 @9-30am

Thyroid Stimulating Hormone

3.32miu/L0.27 – 4.20

Free Thyroxine 16.6Pmol/l12.00-22.00

Total Thyroxine 106.5Nmo/l59.00-154.00

Free T34.69Pmol/l3.10-6.80

Reverse T316Ng/dl10.00-24.00

Reverse T3 ratio19.0815.01-75.00

Thyroid Antibodies

Thyrogloubin Antibody19.400Iu/ml0.00-115.00

Thyroid peroxidise antibodies43.6Iu/ml0.00-34.00

[Nicole1027 in reply to Jump1]

Hmmm....u know my hair fell out in clumps about 2 yrs ago when my symptoms worsened. My hair texture also changed. My actual hair strands were thinner and my overall hair thinned. I have always had super thick hair but looking back the diffuse thinning started 5yrs prior but everyone said i was crazy but they didnt see what i saw. Back then it was gradual thinning with no noticeable shedding and then 5yrs later i had 3 fallout episodes and that was a for sure sign something was wrong and i started my dr journey.

After seeing several doctors i learned that my hair issues are caused by 2 things: a condition called pcos and hashimotos (assuming the hashi diagnoses is correct).

I definately have pcos i meet all off the lab crieria and ultrasound proved it. Truthfully i do have brittle hair and nails consistant with hylothyroid as well. Many women have these 2 conditions together.

Dermatologist arent really helpful the only thing i would have them do is a scalp biopsy to rule out any underlying scalp fungus or infection not visible to the eye causing your hairloss. If someone has hairloss or acne it is coming from an imbalance in the body and derms are useless (they wont tell patients that of course...lol)

My derm prescribed a drug called spironolactone. It is an androgen blocker and used to block excessive male hormones in women that cause acne and hairloss.

This drug is 50/50 and in my cause it made my hairloss worse...however some ppl say it helps prevent more loss at the very least. There are side effects though.

For more info and reviews about everything ive said and drug reviews you can visit these websites:

Womens hairloss project

acne.org

I have been in ur shoes when i started this whole process and was axious and tearful. but now i have accepted that i dont have as much hair as i used to have. Im not bald just dealing with about 35% less hair.I just wear wigs because they are quite fashionable and fun...they have so many wig styles and reviews on youtube. If you act proud others accept it too! For ppl who know me i just tell them i have health issues that cause hairloss and move on. Life happens and none of us will stay the same.

[Jump1 in reply to Nicole1027]

my hair condition changed all of a sudden

I had really bad stress, lost some weight prob half a stone for 3 weeks, then had a week of flu immediately after it, or something like the flu it only affected my throat, I couldn't swallow a thing. got it in Dublin (I think around that time some child was detected with swine flu down there) anyway. in that week I lost a stone of weight I ate nothing. immediately after that my hair tangled when I washed it was hard to manage. in March I noticed hair loss at the temples and front, surprised me but thought nothing of it at the time, in may 16 clumps were coming out, easily 500+ a day, hasn't stopped since, what has happened is the hair loss has progressed to other body parts with hair. everywhere hair grows I have lost it and the hair is so fine and weak and snaps.

I have lost 60 - 65% of my hair so far. I had really exceptionally thick hair.

hair loss from fingers, nose, eyebrows, eyelashes, arms, underarms, pubic, leg and head. watching it disappear.

you are braver than me. i cant live a life like that for another 40/50+ years

something in me is killing my hair everyone notices my hair, in fact it shocks people when they see me and haven't seen me every day.

i agree derms are useless saw 2 they said i was suffering from Telegon. one said it could be alopecia areata. Said give it time it would grow back. didn't care because they don't know. i wouldn't advise anyone to go see a derm about hair loss waste of time and money.

i don't have pcos. other than the lighter shorter periods, i don't have any of the symptoms. periods pretty regular and cause no pain.

[Nicole1027 in reply to Jump1]

Yes! I totally understand the same exact thing happened to me and i went to 3 endos during that time. When i had the massive hairfall episodes 2yrs ago...i also lost hair on my legs, eyebrows, and my eyelashes shedded horribly! I would shed like 6 eyelashes per day on each eye. I even lost hair in my private area with visible sheeding upon showering. I wash my face and eyebrows and lashes were on my washcloth. Each endo said its nothing....yeah right i knew something was wrong! So i finally met the endo im seeing now who diagnosed me with hashi.

I knew pcos was not the main source of my hairloss simply because my female hormones were the same as they always were so i knew some other hormone or illness was to blame.

I feel that the hashi is the culprit because no other illness or endocrine issue causes body hairloss specifically. I have researched body hairloss and thyroid is the only thing that comes close.

Alopecia areata only affects head, anemia only affects head. I having my pcp check for lupus again but it will probably be negative.

After taking low dose synthroid for 2 months all hailoss improved and the body hair eye lashes and brows grew back and head hair stopped shedding. The problem now is that all has started again...according to ppl on this site i have been on to low of a dosage for too long and the thyroid symptoms are coming back...doctors are supossed to increase ur dosage every 6 six weeks until u feel optimal...but some doctors just dont follow protocal because ur labs look good or whatever....they treat labs not patients so im going to buy meds online and treat myself and hope for the best.

[Jump1 in reply to Nicole1027]

I am really very jealous of you. I am not sick enough or bad enough for them to help me. if I am not going to get better I want to get sicker quicker so I can get treatment, isn't that an awful terrible thing to say. just so sick and sad of it all

[Nicole1027 in reply to Jump1]

No its not bad to say ....i say that all the time cuz if u look normal doctors could care less!!! This is true. Even with diagnosis they are scared to increase my meds because they feel like ur not that bad!!! Just hang in there and keep getting bloodwork ....ive been at this for 10 yrs and only now a little something popped up on bloodwork...now i have to dose and treat myself even still. I will let u know about my treatment if i see improvement. Keep me posted as well. This site keeps me going!

[Jump1 in reply to Nicole1027]

oh god evening hearing 10 years in and you are still bad. it is so sad. I will keep you updated. I've lost my faith over this but occasionally I still pray for miracles. oh by the way. Alopecia areata ingonito (diffuse) would affect every body part that sprouts hair and it makes it thinner and finer by all accounts.

[humanbean]

I would suspect severe iron deficiency. Getting a ferritin level checked is not sufficient by itself. The ideal would be to get a full iron panel and a full/complete blood count, but if you can only get one of those, go for the iron panel.

They can be done privately with a finger-prick test in the UK, if that is where you live :

medichecks.com/iron-tests/i...

medichecks.com/haematology-...

If you live in the USA, then you can also get blood tests done privately in many states, without insurance or paying to see a doctor. For links, see about half way down this page :

stopthethyroidmadness.com/r...

[SlowDragon Administrator]

Essential to correct low vitamin levels FIRST

Plus if you have Hashimoto's then strictly gluten free diet likely essential

What are your vitamin D, folate, ferritin and B12 levels?

[Nicole1027 in reply to SlowDragon]

My vit D level is 38, ferritin is 20, and b12 is 1400 however this b12 level was from a diff lab than what my dr uses, when using the regular lab my b12 level was 650 so now im confused about the b12

[maymay28 in reply to Nicole1027]

your total B12 IS 1400. That is the serum level which includes b12 that is stored in your body and that which is utilized. Your active b12 level is 650. That is the b12 that is going directly to your cells and is being utilized now. The difference of the two is your inactive b12 which just sits in your body.

[SlowDragon Administrator]

What’s range on ferritin- that looks very low

Should be half way in range

You in USA?

If so Vitamin D at 38 is OK

Folate test?

Both B12 look good

[Nicole1027 in reply to SlowDragon]

Yes im in the US. I have never once had my folate level tested. I am def going to do that. Didnt even know there was such a test. The range on ferritn at quest labs is 10 - 150 (huge range ). Yes my ferritin stores are never more than 20 it has actually been lower. So it stays low pretty much always but never been anemic

[SlowDragon Administrator in reply to Nicole1027]

You can have lie ferritin and normal iron

Ferritin recommended to be half way in range

Have you had full iron panel done to test for anemia

Antibodies test essential- definitely test TPO antibodies, ideally TG antibodies too

Over 90% of primary hypothyroid is due to autoimmune disease diagnosed by high antibodies

80% with autoimmune find gluten free diet helps

[maymay28]

It seems to me like you need t3 and t4. You need to be medicated.