Does anyone else have these symptoms with hashi... - Thyroid UK

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Does anyone else have these symptoms with hashimoto's?

31 Replies

I've been advised by members on here that I have hashimoto's due to the antibody levels. Just wondering if anyone else is similar. Not diagnosed by a dr. I have seen numerous drs/specialists and no one can figure out what's wrong 🙄

Extreme heat/cold intolerance and unable to regulate body temperature.

Extreme fatigue and exhaustion

Joint pain

Very overactive bladder

Generally feeling run down and unwell

Very dry and brittle hair that breaks easily

Flares ups of feeling like you have the flu

Just no interest in anything anymore and feeling low

Extremely cold extremeties (raynuads)

Weight loss despite increased appetite

I have been following izabella wentz hashimoto's protocol but no difference so far

I assumed typical hashimoto's were weight gain and feeling cold

Thanks in advance 😊

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31 Replies
SydneySider123 profile image
SydneySider123

Hi Sophie

All the symptoms you describe are those that I experienced with Hashimotos.

thanks

Narelle

in reply toSydneySider123

Hi Narelle. I was confused as when I researched hashimotos its cold intolerance and weight gain whereas i am the opposite with extreme heat and weight loss.

SydneySider123 profile image
SydneySider123 in reply to

Yep, I understand. But in my experience weight and sensitivity to temperature can be different for different people. My weight has remained stable throughout this whole experience...it is influenced by the usual factors like food intake and exercise. In terms of heat/cold tolerance, I'm now menopausal so my internal temp gauge is currently on the funky setting.

I guess this is where the blood test results can lend a hand. Are your thyroid blood results completely normal or are they borderline? What other explanations/plans are your physicians offering you?

in reply toSydneySider123

Hi I had suspected a thyroid problem for a while. Back and forward to the Dr's. I used to be freezing. Hot water bottles in summer etc. Then its switched to the heat which is pretty much constant now. Always need to be near a fan. My thyroid tests are normal just now. Only elevated tpo and tg antibodies. To have 6 months thyroid tests. Which doesn't help symptoms in the meantime. No dr had mentioned hashimoto's. Just that they don't know what's causing my symptoms.

SydneySider123 profile image
SydneySider123 in reply to

If it were me, I'd keep looking for a doctor until i found one who specialised in autoimmune thyroid conditions. Eg: a really good endo.

It's unreasonable to live with the symptoms you describe. A quick google search landed me here: verywellhealth.com/thyroid-...

The "What Anti-Thyroid Antibodies Mean for You

" section below was particularly interesting.

By the way, are they testing your T3, T4 and TSH or just TSH? I suspect all three if they are testing your antibodies.

in reply toSydneySider123

Hi I have paid privately twice to see 2 different endos. One said I am only at risk of developing autoimmune thyroid disease and thr other said there is no thyroid problems. Neither one mentioned the antibodies could cause problems. In agree. It's awful some days. I am stuck now on who to see for help. The dr tests tsh and t4 only.

SydneySider123 profile image
SydneySider123 in reply to

ok, right. Do you live in the UK? I'm wondering if the lovely people in this group could recommend a great thyroid doctor. I'm from Australia so can't help there.

Have a read of the link I sent...it's interesting.

Might be good to request another full thyroid panel that includes T3. If nothing else you can start monitoring all three thyroid levels. Also, I'm absolutely no expert BUT I understand that T3 is an important level to monitor because it's the more active part of the hormone so our T4 is converted to T3.

All well and good if your T4 is normal but if your body is not converting that to the active part, the T3, then Houston, you have a problem.

Don't stop looking until you find a medical professional who can help you. It's not normal, necessary or reasonable to feel what you're describing. Medication has helped me enormously and I wouldn't be without it.

in reply toSydneySider123

Hi yes i am from the UK.

I will read the link. Thank you.

Unfortunately they don't test T3 here. Only TSH and T4.

I am going to get a full panel done privately. To monitor them.

I'm starting to struggle with it now.

Can i ask how your hashimoto's was diagnosed? As I read that it's usually diagnosed after hypothyroidism.

Forgot to add the last test done in may. It was t3 too. Results were

Tsh 1.99 (0.27-4.8)

T4 20.5 (12-22)

T3 5.54 (3.1-6.8)

Wetsuiter profile image
Wetsuiter in reply to

You can now get T3 nhs tests done via Monitor My Health for £29. They only do TSH, T3 and T4. I'm hoping that due to it being NHS, my GP will act on it.

in reply toWetsuiter

Hi wetsuiter. I didn't know that. Thank you. Are you having similar problems or symptoms?

Wetsuiter profile image
Wetsuiter in reply to

As. I think I've lost my reply. I'll d it again later

in reply toSydneySider123

Any thoughts on those test results?

SydneySider123 profile image
SydneySider123 in reply to

Hmmm, i'm sorry to say that I'm not the best with blood results. I think other members would be far better able to comment than me.

I was diagnosed when i developed a goiter. It was unmistakably thyroid and bloods confirmed it was Hashimotos. If thyroid isn't the explanation - then something is going on. I really really hope you find a physician who can help or refer you on.

I'm happy to help by sharing anything I can on here. You're not alone.

in reply toSydneySider123

Morning

Thank you for your help.

Were your other thyroid tests abnormal when diagnosed with hashimoto's? I don't have a goitre.

The endocrinologist i saw suspected i have lupus so i was referred to a rheumatologist but they say it's not a connective tissue disease. I am waiting on a skin biopsy due to rashes that a dermatologist said looked consistent with lupus.

It's been a frustrating time.

in reply toSydneySider123

Hi do you have any tips for the extremely dry hair? If you had that issue. It's so bad just now. It's affecting my self esteem as it had always been in good condition. No products seem to help 😔 That's why i'm thinking it's maybe an internal problem

SydneySider123 profile image
SydneySider123 in reply to

Gee, i feel you there. My hair was breaking so badly a few years ago. I have a couple of tips.

1) Do as little as possible to it - ie: no dying, blow drying with heat (cold blow drying is ok if you have the patients for it), definitely no straighters or curling irons. Also, wash it as few times a week as possible (i used to wash mine daily and now am down to 3 times a week). Use dry shampoo if it's greasy and bothering you. Basically, leave it alone to repair.

2) I use Aveda hair products only now. They are pricey but they work for me. When my hair was breaking i used the Invati range and now I use the Damage Remedy Daily repair range.

3) Did you say you've had a full blood count and iron test done? My hair was particularly bad when my iron was low but it can also be that way when my thyroid is mucking up and when i'm generally run down. I have curly hair so it's naturally dry and brittle.

in reply toSydneySider123

Hi thanks for the tips. Even going to the hairdressers i find embarrassing as it's so bad. Yes i have had a full blood count and my iron is fine. My Dr picked up on my lymphocyte levels being low and keep getting lower. Not sure of the significance to that though.

SydneySider123 profile image
SydneySider123 in reply to

Oh, i don't know what lymphocyte is....

To be honest, I was damaging my own hair by stretching it straight every day and it got to the point where it was so broken and thin on the ends that I ended up changing my hairstyle significantly for a few years. Basically, i cut it short - i was ready for the change anyway and it's grown back totally fine. But i still stick to the same guidelines above and treat it very gently.

in reply toSydneySider123

My ends are fine as i get a trim regularly. It's my roots and scalp that's the problem. Still thinking it must be an internal problem as it seemed to change instantly.

SydneySider123 profile image
SydneySider123 in reply to

i agree, everything starts on the inside.

in reply toSydneySider123

I have read up on hashimoto's. Dry and brittle hair is a symptom. The confusing part is the cold and weight gain. As i said i am the opposite

SydneySider123 profile image
SydneySider123 in reply to

Yeah, i understand that.

in reply toSydneySider123

Were you the same?

SydneySider123 profile image
SydneySider123 in reply to

I was cold all the time and my weight didn't change.

in reply toSydneySider123

Ah i see. I was always frozen up until September last year. We had the coldest winter and it was horrendous heat. Windows open and a fan on full and still too warm. I really don't know what's going on now

SydneySider123 profile image
SydneySider123 in reply to

That is confusing. I'm guessing you're too young for menopause. Have you had those hormones tested? I do get hot flushes now that I'm in menopause.

in reply toSydneySider123

Yeah. I'm 37. My oestradiol has been checked and it was high. It's not a hot flush as it never stops. The heats been constant for weeks. Even when the weathers cold. Most days are spent near a fan to keep cool. Can't cope much longer with it.

SydneySider123 profile image
SydneySider123 in reply to

Gee, that's awful. Can you find another doctor? What's your doctor doing about the lymphocyte (did he/she say what that even is?) Did you say you'd been to an endo? It seems like you need more medical attention....

in reply toSydneySider123

I've been with her a while. No one can figure out what's going on. The lymphocyte is part of your white blood count. To do with your immune system. She's supposed to be keeping an eye on it. The endo can't figure out what's wrong either so that's how i feel stuck now. Do you think it sounds like hashimoto's? Just feel lost completely now

SydneySider123 profile image
SydneySider123 in reply to

Look most of the symptoms you describe sound like Hashi's. I feel for you Sophie.

Please don't take this the wrong way - but would you consider talking to someone who could help you manage the emotions around the limbo you're currently in? It won't help the physical symptoms of course but it might be nice to share the burden with a professional who can offer you some tips around how to manage the uncertainty. I find uncertainty so difficult to manage myself.

Can I also suggest meditation....stress exacerbates every health condition. Meditation is part of my tool kit - it's a daily (sometimes twice daily) self care/nurturing ritual with me. I use the insight timer app which is free and available on android and apple. It has been a total game changer for me. Yoga is also lovely - I use yoga with Adrienne on YouTube because she is nothing short of fabulous.

Would you consider those types of things - just to take the pressure off?

in reply toSydneySider123

Hi i wouldn't even know who to speak too, to be honest. As i've not currently been diagnosed with anything just now. It's all still under investigations by the Dr's. I know stress isn't good for any health conditions.

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