8 years HYPO....8 years LEVO...4 years SUFFERING...4 months CRYING

please see whats wrong with me :'(

My first post (i hear it's allowed to be long) so i'll explain EVERYTHING from the top...i just need answers! please :)

Born in 1993, making me 20 now. Aged 13 in 2006, I was taken to a GP who had me sent for a blood test because of plain weakness, skinniness and according to my dad being short which showed I had hypothryroidism. Had no complaints at all other than those. There I was a kid, blind to the Hypo world but to be honest, I felt good other than those 1-2 symptoms. Swiftly started on on Levo 50mg soon upped to 100mg.

During these years, I was sent to a Endo specialist who would monitor my height and weight (and suspiciously once, my privates LOL.) Nothing much came out of it, so, not knowing much I gave up going and continued to be the normal happy kid...

Come 2009 and a little before, I started college and I could sense something in my body was not right. I would sleep for ages and feel worse. Only felt a little good at night. My face became BAD! acne and all sorts. Puffiness, darkness. I felt confused always, totally lost and fogged. Use to drag my self around everywhere! Everyday I've had leg muscle aches from top to bottom. Doctors didn't do much apart from up the dose on thier beloved LEVO! Struggled in college from a bright A student to one just above a U.

2011 forced me to take a gap year as I didn't get my grades. Socially, mentally and physically effected. Would get in trouble at home for being, what the world call us, LAZY (who by the way, did you know are all HYPO specialists?...NOT)

My body became bad! I had terrible hair loss untill my scalp was exposed. Thin dry hair. People who would see me would say "what's wrong with you" "what's happened to you"

Luckily, I resat and scraped the required grades and made it to uni. Results came out this August, meaning I was freeeeeeee untill October. Stress freeee, tension freee but little did I know...

...Past 4 months I thought I will collapse. I have 90% of Hypo symptoms. Never really had weight gain but always had a small pop belly. Still skinny, no muscles. Can't go gym or play sports, im tooo weak. Can hardly walk. Im on 125mg Levo atm. Tbh past few days I stopped...Levo has increased my hair loss a LOT and damaged me.

LEVO DOES NOT help my symptoms. It's just made things worse. I feel ashamed to name the basic symptoms because I have them all (apart from weight gain)

I get chest pains, difficulty breathing, confusion, being lost, slow speech, MUMBLE AND SLURRED SPEECH. Heavy sweet craving and all symptoms of low sugar levels especially after meals.

Visited my GP a LOT, and other GP doctors. Just said they cannot prescribe anything but levothyroxine and the endo who I will visit soon should be able to do something..I hope.

My blood test result from August 2013 are as follows:

FULL BLOOD COUNT: (normal apparently)

- Haemoglobin = 14.7 (12.5-17.5)

- Total White cell count = 5.1 (4.0-11.0)

- Platelet Count = 180 (140-450)

- MCV = 88.9 (78-96)

- RBC count = 4.89 (4.6-6.0)

- Haematocrit = 43.5% (37-54)

- MCH = 30 (27-32)

- MCHC = 33.8 (31-36)

- Red blood cell d. width = 12.7 (9-15)

- Neutophil count = 2.5 (2.5-7.5)

- Lymphocyte count = 1.9 (1.5-4.0)

- Monocyte count = 0.5 (0.2-0.9)

- Eosinophil count = 0.1 (0.0-0.4)

- Basophil count = 0.0 (0.0-0.1)

- NRBC count = 0.0 (0.0-0.01)


- Serum Sodium = 140 (133-146)

-Serum Pottasium = 4.2 (3.5-5.3)

-Creatinine = 85 (62-106)


- Albumin = 50 (35-50)

-Alkalie Phosphatase = 65 (30-130)

- ALT/SGPT = 9 (0-45)


- Serum glucose = 4.1 (2.5-7.8)


->90 all normal (90-170)

now comes the abnormal tests:


- total Vitamin D = 22.8 (50-150) **on D3 25mcg


- serum ferritin in august 2013 = 73.4 (25-300) ** surely these are low for a hypothyroid patient? **

-serum feritin in september 2013 = 42.8 (25-300) ** surely these are low for a hypothyroid patient? **

now comes the awaited thyroid ( i was rejected total3 and other tests at the lab even after the GP requested it.


Dec 2012 - TSH= 15.72 & T4 = 12.5

July 2013 - TSH= 2.19 & T4 = 14.5

Sep 2013 - TSH=7.67 & T4 = 12.9

tsh(0.4-4.5) t4(10.3-19.4)

Firstly, notice how my T4 is always being almost in range, its TSH that is the wierd one. Nevertheless, I don't think i'm reacting to any T4.

Also, I think my iron levels, although in range, are also low. Any suggestions on this too?

I was prescribed folic acid 5mg once daily due to that also being low and colecalciferol(D3) 25mcg once daily.

Pretty much given up on levo, stopped taking it as its made my hair worse!

I just remembered I also have these scary head spins since 2012. I'll be sitting there and suddenly everything around mean spins crazily for a second, I loose balance and have to wait for a moment.

According to my old endo "it was clear have a auto-immune disorder" whatever that means in relation to this. Its just such a broad term.

My T4 from 2006 - 2007 has changed from 12.3/15.2/17.1/17.6/16.9

My TSH from 2006- 2007 has been 25.4/8.97/6.01/7.76/0.89 respecitively

I just don't know what to do.

All and any advice will be pretty much appreciated. Im sure i've missed thing but hey, thats what being hypo is all about :) haha...dont even know which category this should go in as it hits em all..

I'll add and can provide more if anyone needs to know

thanks people!!

Last edited by

14 Replies

  • It 0022

    Welcome to our forum. You are not alone, many are more or less in a similar situation, although you are very young and it is a pity to have health problems from the age of 13.

    Your symptoms do sound quite hypothyroid and, like many of us, we have to educate ourselves in order to try to improve our health. Of course, we do need co-operative doctors or endocrinologists but they have guidelines which they adhere to.

    I cannot answer re your blood tests but someone will. Your Vitamin D is very low and that in itself can cause problems. Your TSH is too high and your GP should also check your vitamin B12 as we are often low in both these essential vitamins.

    The first and most important thing is to begin your levothyroxine immediately as not taking it will make your condition worse.

    Levothyroxine didn't suit me but I am now well but you have to find your way through a maze.

    It would appear to me that the doctors you have seen do not know about treating thyroid gland conditions. You will soon know more than them.

    First of all email louise.warvill@thyroiduk.org and ask for a list of NHS Endocrinologists who are sympathetic. She also has a list of private doctors but that may be expensive. You can then ask for a referral if one is near you or you may be able to travel.

    I can definitely say I know exactly what you mean by slurred speech and hair loss.

    More answers will come along but you have given good info re your blood tests plus the ranges.

  • Before when I was younger, I would question my self regarding these support groups and websites be it for whatever illness or problem.

    Now I can understand and thank you and those to reply later from my heart. It really can make a difference :)

    Ps i write this laying on the sofa unable to walk :'(...i just want to laugh it away

    Would A+E do me good?

  • I cannot say whether A&E would be helpful. They could be and it wouldn't do any harm. Of course, they will probably say the reason is that you have stopped the levo but I can well understand why you have as that is the only thing that is recommended to us on the NHS regardless of how it makes you feel. You could always strike lucky and have a sympathetic person.

    At the moment I think levo has to be taken till you find an alternative.

    Best wishes

  • Well i was on levo all this time. GP gave a extra 25mcg to add and well symptoms became worse and HAIR LOSS was emotionally pain full as tbey too fell out in larger numbers. I see why and what your saying but atm i feel it has made things worse

  • Hi

    I know exactly what you mean as I have been completely bald twice. I felt worse on levo so ask your GP to refer you to an Endocrinologist who will be able to help you more. If you email louise.warvill@thyroiduk.org she has a list of NHS Endos or private doctors one of whom may be near you.

  • Wow! When you say twice i'm assuming the hair does grow back? That is probably in my top 3 concerns along with extreme weakness and serious brain fog.

    So what made your hair grow back? What is the quality of it eventually? Any tips, its soo dry,thin and brittle :(

    Can't thank you enough!

  • I actually developed another auto-immune condition called Alopecia Areata. Twice I had steroid injections by a dermatologist and they were really helpful and it grew back probably a bit better than my original hair.

    In April of this year I saw the usual signs of hair shedding again and I was unable to see the dermatologist as I was going out of the country for a few months. I saw my GP and she gave me a steroid scalp lotion and it stopped shedding and is now growing again although it is still a bit thinner than my original hair but some people have something called Areata totalis which means their hair never comes back, so I console myself it could be worse.

    Many people complain of thinning hair and it is one of the clinical symptoms but sometimes it comes back when you are on optimum meds and this is a link from STTM re hair loss.


  • Hi and well done for finding this site. I'm sure the clever people on here will be able to help you! I'm not one of them but my gut feel is that your TSH is still too high and your T4 could be higher. The reduction in FT3 from 2006/7 is really odd - it suggests that you're not converting the levo T4 to T3, so a change to T3 only liothyronine may help?

    Your vit d is far too low and I think you need a high dose of this to get it much higher.

    I have sons of your age and I really feel for you as this should be a very exciting time of life, so I really wish you well and send hugs. Incidentally, one of the boys' friends was tired all the time and it turned out he as gluten intolerant, maybe you could try a week without gluten (in flour, pasta, bread, cakes etc.). Please start taking your Levo again until you have leant more.

    Keep reading and posting. Mary.

  • Thanks a million! Starting tomorrow i'll begin those Levo again (dreading it however)

    I've never had my T3 tested just T4 TSH as edited above :o

    I've tried many diets but anything is possible atm. I was put on a crazy 100,000IU = 2.5GRAMs for the first 2 days..then the stanard dose...no help however.

    I'm sure the iron levels are playing a huge part too...im on folic acid but may need some ferrous sulphate too

  • If we are hypothyroid (hypo which means slow) our bodies do not produce enough thyroxine to enable enough T3 to get into our cells (the active hormone) and we have millions of cells which need it particularly brain and heart. That's why we get further symptoms. Our brain contains the most T3 cells We are prescribed levothyroxine (T4) which suits a lot of people and it should convert to enough T3 but sometimes this doesn't happen and why we still have symptoms and feel unwell. Sometimes too hypo patients still feel quite unwell but the GP's don't quite understand why as they look at our TSH blood test result and if it's within the normal range tell us everything is fine when it isn't.

    I also understand people when they take levo and they feel much worse they think - I am not improving what's the point of keep taking it. It can be the binders/fillers that's the problem as the thyroid hormone itself shouldn't.

    Get Dr Toft's booklet from Amazon and I've read here that some who have read it and pointed out things to their GP who has then become more knowledgeable and prescribed differently or added some T3.

    P.S make an appointment for a new blood test and also ask for Vitamin B12, Vit D, iron, ferritin and folate. The first two in particular are usually deficient with hypo.

  • I've had all the tests needed. Vitamin D was low(as above) so i'm being treated for that. I'm also on folic acid.

    I did eventually go to A+E because of the extreme weakness etc. My hair has been faling out in huge numbers and i'm so soo scared. They didn't do anything apart from say "wait for your endo appointment." The GP there said I could start myself on Ferrous Sulphate so I have.

    It's certainly this hypo issue and 8 years of levo has just made things so much worse.

    What do I do?

  • I hope my reply didn't worry or scare you and sorry the A&E weren't too helpful.

    You can take your levo either first thing when you get up and not eating till about half to one hour later. Any supplements should be taken 4 hours later so nothing interferes with the uptake of levo.

    Some find it more beneficial to take levo at bedtime, not having eaten 2 hours beforehand. Levo should be taken with a glass of water.

    Ask your GP to refer you to an Endo.

    Let us know how you get on.

  • lol don't worry i've been scared for a long time now. I really appreciate your help..a lot!

    I see the endo next week hopefully at UCL hospital.

    Just want to start proper sucessfull treatment - don't know what will happen there.

  • Good luck, I hope they are open minded and sympathetic and listen to you.

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