Low tsh, lots of symptoms!: Im new here and ive... - Thyroid UK

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Low tsh, lots of symptoms!

Kimethy
Kimethy

Im new here and ive just wrote out the longest post that then decided to freeze so now im going to try and recap but in a very quick and easier to read way *fingers crossed*

Ive had ongoing symptoms for the last couple of years but its only been the last couple of months that ive googled enough to maybe think it could be thyroid related.

My symptoms include

- hair loss. Its so thin and dry :(

- fatigue. Im forever tired even the toddlers i work with ask me if i need a nap because im forever complaining of being sleepy. I tried not napping on my days off this year incase i was just oversleeping but it was just awful

- my basal body temperature is low. Ive recorded my temp the last two weeks and on average its about 35.8. This has also been noted during a heatwave weve been having in the uk!

- forever cold hands and feet

-cant deal with extreme weather. If its hot i feel like im melting but then if it changes im wrapped in all the layers. Sometimes i feel like i get what i think hot flushes would feel like. My face gets red and hot. My hormone tests also came back normal

-brain fog and confusion/irritability. The start of this year the brain fog was very bad and my work life struggled badly

-pins and needles in my hands and feet

-muscle weakness and severe joint pain. I cant carry anyyhing without pain gor days. I had exercises for joint knee pains from a physio, they helped one knee from grinding but the pain remains. Typing this is playing havoc with my wrists :(

-i had severe itchiness everywhere last year. I tried chznging my body wash and soap powder and taking allergy tablets. Nothing helped then a couple of months ago i tried using the same bodywash etc and my skin didnt react. I still get itchy sometimes though, just not as severe as it was.

-the last few months ive had dizziness which the dr gave me exercises, they did nothing at tge time, but recently they have slightly improved. Dizziness still occurs every other day but i cant figure out any main triggers

-headaches and sometimes dry itchy eyes that get bloodshot easy. Sometimes trying to focus takes up so much energy

-thumbnails are ridged and flaky. Other nails are ridged and do not have half moons at all. Toenails are ridged and look like they could have a fungal infection starting

-sometimes i feel like i need to wee a lot. Some nights i can get up 2, 3 even 4 timex. Diabetes test came back normal.

-stumbling speech like i cant talk as quick as id like. Its frustrating and something ive never experienced before!

-stomach pain, i wasnt sure if this was an allergy thing or a stress thing. I tried staying away from dairy and off bread but it didnt seem to make a difference. This symptom seems to have settled the last few months.

There are probably lots more but as i said my memory isnt the best. Is it common for symptoms to come and go?

Onto my test results. I was told i was getting the full thyroid tests but have since found out its only been the tsh!

In may it was 1.44 (0.30-4.50mIU/L) bloods taken at 12.05

In june it was 1.07 (0.30-4.50mIU/L)

Bloods taken at 2.00

My ferritin in may was 51 and im currently taking ferrous fumarate to see if this rises enough to see if that will help my hair and energh levels (so far not rly)

Im sorry if this is long and rambly i just need some advice and someone to help me get to the next step because i srsly dont know how im going to live the rest of my life like this because i just dont feel right at all :(

29 Replies
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SlowDragon
SlowDragonAdministrator

Some of your symptoms could be low vitamins......B12, folate or vitamin D especially

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

(Stop ferrous fumerate a week prior to testing)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's very important to get TPO and TG thyroid antibodies tested at least once .

Gluten free diet needs to be absolutely strictly gluten free for several weeks/months to really asses if it's helping

Kimethy
Kimethy
in reply to SlowDragon

They tested my vitamin d in may which came back really good i was told 47 (50.00-175.00nmol/L) and then told to rake an otc multivitamin which i do take daily. They didnt seem to test the b12 which i for ask for 😑

I onky recently learnt about the need to get the earliest appointment for thyroid bloodtests sadly.

I am in the process of changing dictors surgery as the dr i have now has never been very good.

Thank you for the reply and advice!

Ok, you will have gathered from reading this forum TSH isn't enough to show what's happening with thyroid health, sounds like you doctor isn't going to do more, so I suggest you get a good private lab test like Medichecks or Blue Horizon check with TSH, Total Thyroid/thyroxin, FT4, FT3 plus two autoimmune antibodies (TgAb and TPO), plus the 4 important vitamin/mineral tests for VitD, B12, folate and ferritin. These cover a whole range of thyroid problems, including hypothyroidism, Hashimoto's autoimmune disease and the vits/ mins that might also be low ( as a characteristic of Hashimoto's) and in themselves causing some of your symptoms. If you look on a Thursday both firms offer discounts, so you should pay about £79 for the kit to do this 10-11 different tests ( but you don't have to use it immediately). Yes it is not cheap, but it has the distinct advantage of being quick, and importantly you get the thyroid results from one blood draw which is important for comparison between FT4/FT3 etc, and you get what you ask for. Get the blood drawn early morning 8-9 am, before you eat. The tests provide a good start , and along with forum members' advice, you'll be well on the road to recovery. Good luck Kimethy.

Im in the process of changing doctors because theyve always been shocking but after the agressive way she spoke to me last time plus the lack of testing is just the last straw 😔

Ill keep an eye out for those test deals. Thank you for the advice!

Great advice from the first two friends to reply. I definitely think you can only get any idea what is going on with your own blood tests .....but definitely do not supplement first as this will skew your blood tests for months as it sounds like low b12 for a start and if you take this in any form...on its own or in a multi you will not get the correct result which I suspect will be very low. Health unlocked sister site called Pernicious Anemia also has great advice.

Very simple to test your own bloods with those companies , you only need a tiny amount. Takes about three days to hear back online.

If you post your results on here you will get help.

Kimethy
Kimethy
in reply to Marymary7

I remember asking for my b12 tested but they obviously didnt do it. I do take a multivitamin with minerals otc tablet daily but as you say that wouldnt be enough.

Thanks for the reply!

Marymary7
Marymary7
in reply to Kimethy

No but your simple multivitamin will skew the true results in your body in any blood test and make it look ok perhaps for b12 unless already extremely low as it gives a false higher reading when you supplement any b12 at all.

Your vit D at 47 is below the lowest level of the range you quote which was 50.00 - 175.00nmol/L so hardly perfect.

Kimethy
Kimethy
in reply to Marymary7

Oh i understand you now. Srsly my brain. My last results would have been influenced with the multivitamin and vitamin b complex. Urgh this is so annoying that the dr never mentioned anything about this, i did say i was taking vitamins but they shrugged it off as nothing serious.

Incidentally multivitamins are bad as they often contain elements like for eg iron or calcium that bind together all other Vit/ mins. so you can't absorb them, plus as they tend to be cheap they use poor quality compounds that also aren't the easiest to absorb. When you've got tested and see a need to supplement look up SeasideSusie's previous replies to posts on optimum vit/ mins. doses, brands etc.

Hidden
Hidden

It couldbe thyroid related but as others have said low B12 possible or vt D and your low iron not helping. You do need some better blood tests as TSH on its own says very little.

Kimethy
Kimethy
in reply to Hidden

My vitamin d was almost perfect according to this doctor along with my ferritin. They didnt seem to test b12 at all.

Vitamin d 47 (50.00-175.00nmol/L)

Ferritin 51 (15.00-150.00ug/L)

Im so annoyed that i was told they had done all the thyroid tests when it was only one! 😑

Thank you for the reply

SlowDragon
SlowDragonAdministrator
in reply to Kimethy

A vitamin D test result of 47 is NOT perfect. It's insufficient.

Under 25 is deficient

25-50 is insufficient

Supplementing to improve vitamin D to at least 80nmol, but 100nmol might be better

Supplement a vitamin D on its own, not a multivitamin

Better You vitamin D mouth spray is good. Suggest you supplement 1000iu for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Multivitamins are not usually recommended on here as they often have too little of what we need and stuff we don't need too

Getting full private testing is next step if you can't get GP to test B12, folate and ferritin

Kimethy
Kimethy
in reply to SlowDragon

We were both shocked at how high my vit d was because im such a recluse who never goes out in the sun! She seemed very impressed that it was so high becaus all her other patients were so low. Srsly the more i write about this doctor the more i never want to see her again!

Thanks for the supplement suggestions. It did cross my mind that it seemed a bit strange that some multivitamins would have iron with calcium etc..

Hi Kimethy. Just to add to the above posts. Strongly recommend you get private blood tests then post your results on the forum. You will get excellent support and advice from fellow sufferers. I got full thyroid & vits via medichecks. I arranged through them for a nurse to come to the house first thing in the morning (after fasting 12 hours and no thyroid meds but lots of water) to draw blood from my arm which I found to be completely hassle free. Best wishes in your quest to get well xx

Kimethy
Kimethy
in reply to LiziBG

Thank you. If i cant find a better doctor soon then ill definitely be looking at private tests.

If you’re going to go for private testing search for discount codes on the lab you’re using. I very often find 25% off medicheck.

Your symptoms sound exactly like mine where when I first got sick. My TSH at the time was 2.0 and like you it was the only test they did. But 6 months later when they retested it was 13.8. They only retested because I’d gained a lot of weight in a very short period of time. I think because I have Hashimoto that in the early stages I was probably having swings from hyper to hypo but I’m new to thyroid issues so that could be a loaf of rubbish!

I really hope you get an answer soon because I know what it’s like to live with those symptoms. I really didn’t want to carry on if that was going to be my life but thankfully things are now a lot better. I hope you get some answers soon, kindest regards 💐

Kimethy
Kimethy
in reply to rosserk

Thank you, i would love to find a doctor who will listen and know what to test but it looks like itll probably be those private tests!

I wish i had known about early morning testing as most of mine were done later which is annoying. My weight seems to be the only thing im not concerned with? Theres been no change other than my clothes getting a little looser after a few weeks of not being able to eat anything. The scales havent changed though which i find weird lol

Thank you! Its sbeen such a horrible few years that im at the point where im willing to accept anything as long as i can then try and fix it! Its reassuring to read some of the posts on this website.

Are you taking levo? If so has the pharmacy changed supplier/manufacturer?

Some folk have problems with one manufacture and fine with another. There is one manufacturer of levo that causes me to itch, like I haven't rinsed off soap.

No im not taking any medication as all tests have come back normal.

I hope you get to the bottom of it.

I have used medichecks and got tests I couldn’t get at the doctors, then posted them to this group and the lovely folk here helped me understand them.

Me too! Lol

Im in the process of finding a new doctor and hopefully they will at least listen to my concerns and test more than just the tsh!

Everyone seems so helpful and friendly here its made posting so much easier for me 😊

How old are you Kimethy?

A lot of what you are suffering could be menopause or perimenopause related. Menopause and thyroid overlap a lot of symptoms. The brain fog is very menopause.

I turned 35 in may.

The first time i went to the dr two years ago we both agreed it sounded very similiar to menopause symptoms because at the time my periods were acting strange. They tested my hormones, i was told it was fine and after being on iron tablets (i had a low ferritin of 14) my periods went back to normal. It was never brought up again after that.

Might be worth asking for a repeat test. And of course, during perimenopause, your hormones will be fluctuating a lot so if you test on the wrong day (by accident) you may look normal. A few days later you may not.

My mum did mention that my great grandmother went through early menopause so it is in the family. I will make sure to ask when i eventually find a new doctor. My last tests did include testosterone i think, which again was fine ( the words fine and normal makes me shudder so much now!)

You would think nowadays there would be easier and more effective ways to test this stuff.

You have a lot of symptoms similar to me. I suffer with Fibromyalgia but my condition seems a lot worse since having partial thyroidectomy.I think you should be seen by both Rheumatology and Endocrinology.

Hope this helps and you get a diagnosis soon and medication to help you feel human again.

Kimethy
Kimethy
in reply to Di01782

I have a refferal to rheumatology but they dont have any clinics so i have to wait until i hear from them. The dr did give me a few blood tests that involved rheumatoid arthritis? But again, it came back normal.

Im back on tuesday to see a doctor who has an interest in dermatology about my hair loss, so i might bringnup my other symptoms again to get his opinion.

Thanks for the reply 😊

If your doctor won’t order tests, defo pay and get a full picture. I used blue horizon. I’m new to this too, but feel your pain about all those symptoms - presumably all could be down to low iron but better to get full picture. Even then it’s tricky! I dunno if all my similar symptoms are low B12 or hashimotos - been on levo 5 weeks, less tired, still achy, fewer nightly wees, oh jeez so many symptoms, some better, some same. But good luck!

Kimethy
Kimethy
in reply to JAmanda

Im back to see another doctor on tuesday about my hair (he supposedly likes to specialise in dermatology?) And im going to bring up some other symptoms i have like my ridged nails and ive noticed i have a scalloped tongue. Ive had it for years and thpught nothing of it but its actually not normal hahaomg 🙈

This is the last chance im giving this doctors surgery and im already kind of over it/thoughts of cancelling it but ive got nothing to lose apart from petrol at this point!

Thanks for the reply and im glad to see youve had some improvement, fingers crossed it gets better asap for you 😊

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