My feed
Premium

Please
or
to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Autoimmune disease

Hashimotos?

21 replies

JTow · 29/05/2020 19:00

Hi, can anybody shine any light on this? I have had joint pain, rib pain, tingling sensation all over my body, brain fog and a pressure feeling in my throat for almost a year now. Had thyroid blood tests with GP that all came back normal, referred to rheumatology and all tests came back normal. I had some blood tests done privately as I knew there was something going on. They came back with raised TG antibodies 400+ all over thyroid tests were within normal range. Vid D was low, iron and folate borderline. My GP was not interested in these raised antibodies and said that a lot of people have them for no reason. Could it be Hashimotos? Feeling like a zombie most days with no energy!

OP posts:
Report
JTow · 07/06/2020 14:09

Oh hope you feel better soon. It is crazy how much food can have an effect on certain symptoms x

OP posts:
Report
Amymone · 07/06/2020 09:40

Yes it really helped me. Until I got pregnant and became totally nauseated by all gluten free alternatives and started craving wheat. Fell off the wagon in a big way and now the blisters are back :(

Report
JTow · 07/06/2020 09:35

@Amymone do you find diet helps too?

OP posts:
Report
JTow · 07/06/2020 09:23

Thanks everyone, my gut feeling is Hashimotos and have already gone gluten free which has helped a lot - especially with the joint pain! My TpO antibodies were normal just the TGAB that were raised a lot. I have read that either can mean hashis? GP doesn't agree. Stomach pain and bloody/metal taste is my new symptom, feel silly to keep going back with new symptoms Confused

OP posts:
Report
Amymone · 06/06/2020 22:05

Funnily enough my journey included dermatologists' visits too. I get itchy blisters which I'm sure are related but they were baffled. I think (hope not) it could be celiac...

Report
Amymone · 06/06/2020 22:05

Funnily enough my journey included dermatologists' visits too. I get itchy blisters which I'm sure are related but they were baffled. I think (hope not) it could be celiac...

Report
ClientQ · 06/06/2020 21:59

Ah makes sense. I was meant to be at dermatology but accidentally ended up at immunology (LONG story) who said "while you're here, let's do an autoimmune blood screen" and there you go, results!

Report
Amymone · 06/06/2020 21:54

Sounds like Hashimoto's then. The endocrinologist said to me that TPO antibodies above the normal range (which is low) = a definitive diagnosis

Report
ClientQ · 06/06/2020 21:26

@Amymone mine said positive for thyroid peroxidase antibodies?

Report
Amymone · 06/06/2020 21:21

Sounds a lot like Hashimoto's to me, OP. Or autoimmune at least. Did you get tested for TPO antibodies as well as Tg-Ab? TPO antibodies are definitive in a hashi's diagnosis. I had symptoms very much like yours - crushing fatigue, brain fog, hair loss, inflamed burning feeling in scalp, dry eyes, intermittent lump in throat. It took a switched on locum to test for thyroid antibodies, yet it took 2 years for my thyroid function to go out of the normal range. Any GP who insists on going by thyroid function alone doesn't know what they are talking about. I was highly symptomatic for a long time whilst still being clinically euthyroid. Also autoimmune diseases tend to cluster together so if you have symptoms that aren't consistent with Hashimoto's it doesn't mean it's not going on. Having said that, everyone's Hashimotos symptoms are pretty unique. Good luck OP and keep advocating for yourself. It takes on average several years to get an autoimmune diagnosis but you have a head start with a positive antibody result. Other thing to mention is going gluten free (😫) massively helps most people in this situation xx

Report
ClientQ · 06/06/2020 21:14

Mostly just tired but not depressed tired, just.. bone tired. Achy arms like changing the duvet hurts, hair loss, and weight gain

Report
ClientQ · 06/06/2020 21:14

Mostly just tired but not depressed tired, just.. bone tired. Achy arms like changing the duvet hurts, hair loss, and weight gain

Report
OhLookHeKickedTheBall · 06/06/2020 21:13

I was fobbed off similar to you and the one gp that was willing to trial me in Levo closed and my new gp isn't interested at all. Old gp mentioned trying the auto immune protocol (it a diet thing) as he said some of his patients had reported improvement with it, though didn't say it would definitely help but wasn't any harm trying. It did improve things for me, my antibodies are lower though still far above level and my TSH ranges about a lot less. Hope you can get an endocrinologist appointment though.

Report
JTow · 06/06/2020 21:09

Thanks for the replies. Hopefully I'll be able to get an appointment with endo soon as I have given up on the GP, sure he thinks I'm just being dramatic! What symptoms did you have?

OP posts:
Report
ClientQ · 06/06/2020 20:41

I've just had bloods come back with raised antibodies. Had them repeated and my GP was reluctant to say it was hashimotos but said my TSH is rising and my T4 is dropping. TSH was 7.2 (slightly out she said) and T4 11 so she's started me on levo to be reviewed and tapered up in a few weeks (only on 25)

Report
Lonecatwithkitten · 06/06/2020 17:18

There is a condition that goes with Hashimotos that causes the thyroid to enlarge my DP has it in addition to hypothyroidism signs, he can not shout and struggles to speak loudly beyond a minute or so, he has a very wide neck and coughs frequently. A good endo should pick it up straight away - his did just by looking at him. He subsequent,y then went of to develop and even rarer complications. Push for further referral, though in my experience rheumatology will care about your thyroid antibiodues.

Report
sunshineandlollypops · 04/06/2020 13:35

Or it could be an enlarged thyroid. An ultrasound of the area will show what is there. Talk to your dr about a referral.

Report
NeurotrashWarrior · 04/06/2020 13:18

That sounds like a goitre?

Report
JTow · 29/05/2020 21:42

Thanks for the reply. My TSH was 4.2 last year but now 1.5, so in range. The antibodies are still elevated. It's like a sensation of a button being too tight on a shirt on my neck (if that makes sense). Might try and get an appointment with endo when possible.

OP posts:
Report
RoseyOldCrow · 29/05/2020 21:03

To clarify - whatever the cause of the lack of production of thyroid hormones, you'd need Levothyroxine (NICE standard) to replace them.

Report
RoseyOldCrow · 29/05/2020 21:01

I'd ask for a referral to an Endocrinologist, this could be more than your GP is willing or able to resolve (obviously this may take some time at the moment unfortunately).
Meanwhile, you'll need blood tests to look at are TSH (thyroid stimulating hormone, made by your pituitary) and T3 & T4 levels. A high TSH shows that your pituitary is instructing your thyroid to make hormones but it isn't able to do so; low T3 & T4 will confirm that.
To some extent, Hashimoto's or another direct thyroid gland damage isn't really relevant to the problem. If you have very low TSH levels then it could be your pituitary isn't making that, to stimulate the thyroid gland to make hormones. Investigation of that is the job of the Endo & can have many causes, temp or perm.
From my experience, sensations in the throat are unlikely to be due to Hashimoto's, obviously there could be another cause - have you had CRP or ESR checked as these can indicate an infection.
Best wishes.

Report
Please create an account

To comment on this thread you need to create a Mumsnet account.