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Autoimmune thyroiditis/Hashimoto's thyroiditis - help!

(19 Posts)

Well I've gone back on the pill (cerazette) to control my horrendous periods and I'm absolutely certain it's bringing my TSH levels down, test on Friday had my levels at 3.75 which is the lowest they have been for 18 months.

Of course I'm overjoyed that for now I'm within "normal" parameters but I still feel crappy and in constant pain, and the GP seems entirely disinterested. Bleurgh.

awaynboilyurheid Thu 24-Oct-13 08:48:05

Blotted Hi there another fairly recently diagnosed Hashimotos thyroiditis sufferer and sufferer being the word , don't worry about only increasing thyroxine slowly, apparently that is best way for it to work, I kept thinking with each increase I would feel better reached 100 felt ok but then started to feel even worse, now back to 75 and waiting to see private endo so increasing quickly is not always the only answer. Its tricky getting balance right because we are all individuals ,and in my limited knowledge I think with Hashis we go over and under so varies as to when thyroid is under attack from our own antibodies ,awful isn't it,there is a support thread on here too can help speak to people who know how you feel as opposed to folks who say Oh yes my nan/auntie/ has that you'll be fine when you go on thyroxine,angry and yes devastating when you go from busy busy me who went to zumba swimming walking and you to become someone who could just sit all day, its so so so badly misunderstood so hugs from me to you x

I too have Hashimoto thyroiditis until my thyroid dies I won't be medicated. its a major pest.

Sorry mummabear I just saw your reply.

I'm still not being medicated, in fact my GP has been pretty dismissive about my symptoms which is putting me off going back. I am overdue for getting my bloods done so I'm partially to blame there.

My symptoms come and go, but I was advised that would be the case as my thyroid sputters to a total halt. If I overdo it, I really pay for it the next day in terms of my get up and go. I really should go back and moan about it.

mummabear1 Thu 19-Sep-13 05:28:19

Hi there,

I could have written this exact post! I also am stressing about how this might affect my quality of life and life expectancy! I have three small children and now Im worried they might have it too (or get it).

I only found out I have Hashimotos a week ago and although like you its only slightly out of whack I have a tonne of symptoms and feel like shite. I have a feeling my GP is going to suggest the wait and see approach which Im not happy about.

Will be speaking to my specialist in the morning so hopefully I can get some info on what happens next.

What has happened to you since your posting? Are you on any meds? Are you feeling better?

ivykaty44 Sat 12-Jan-13 16:15:12

They usually only do the anti. Body test once and some times not at all depending on gp or endo
i would ask for gp to refer you first and be firm also ask what thyroid test were done and the result because without then you do not know whether you are boarder line or very hypo and some gp to

Welovecouscous Sat 12-Jan-13 15:08:29

Four sounds lovely! grin

I can see why you don't need to TTC!!

Yes - I would look into private endo - really helped me.

CousCous - HELL no, haha! I have four and that is enough for any idiot ;) Private might be an idea, I'll see if I can find out how much an appointment would skin me.

I think that this has been rumbling on for years for me, but it's only now that my thyroid is in the process of dying off that the GP has been able to pinpoint it. I've had such horrendous mood swings/depression that I thought I had bipolar disorder earlier this year, I was so scared. Pretty much every symptom fits me. I think - like Iwearblack said - that my thyroid is still having wee bursts because I swing from being horribly constipated to horribly the other way (TMI sorry!), from being exhausted to being full of energy, from being the happiest person alive to wanting to kill anyone who comes near me.

digerd Sat 12-Jan-13 14:22:18

I had both as when being treated to slow my Thyroid down ,I was overdosed and went underactive. Text book for both, including slurring my speech, and sounding drunk, when very underactive and I was only 25. I went from being a maniac with sunken cheeks, emaciated body and bulging eyes < and neck> to a bloated cretin in 10 weeks. Long time ago, but remember it well.

Welovecouscous Sat 12-Jan-13 14:20:36

Blotted, I'm on 125/100 alternating, because 125 made me a bit jittery, but 100 wasn't getting my numbers quite right.

I also couldn't eat. In fact I just couldn't face food at all so I became very thin and anxious and was misdiagnosed as depressed and given ADs. Once on the thyroxine all my symptoms went and my appetite came back. You will feel so much better when you take the drugs!

My experience is that gps increase the dose very slowly. Ideally you would be referred to an endo - when that happened for me my dose was increased much faster and I felt better quickly. Ask your GP if they can do this. You can go private for about £200 in London - will be much less elsewhere I would think.

Are you TTC by any chance?

Iwearblack Sat 12-Jan-13 13:45:50

I think that with hashimotos you can get variable symptoms as well; sometimes like hypo and sometimes like hyper. No-one ever seems to be like the textbooks say!

Ah, that makes sense ivykaty. I just saw 'weight gain' as a symptom and assumed it would mean I'd want to eat more but actually I'm having to consciously eat at three mealtimes.

I'm not sure if they did an antibody test - I'm assuming they did to give a definite diagnosis - but I know that's the one they want to repeat in 3 months.

ivykaty44 Sat 12-Jan-13 13:19:15

blotted, your appetite is suppressed as your metabolism will be running very slowly, it is the opposite with hyper as your metabolism runs fast you get very hungry and consequently eat more.

Did your gp do an anti bodies test as well as the blood tests to check your T3 T4 levels?

digerd Sat 12-Jan-13 13:13:19

Years ago I had an overactive Thyroid, which was eventually cured with the op.
20 years later, Thyroid became slightly underactive, but I had no noticable symptoms, and take 50mcg daily of Thyroxine.< plus HRT, as I,m post menopausal>
Sister became underactive after birth of 2nd baby, but also had no symptoms, other than her periods stopped. Her dosage keeps changing despite having no symptoms. She was on 150mcg and now reduced to 75. Apart from her complaints of ageing - now 65- she is still very fit for her age.

That's REALLY interesting what you're saying about spots, I have really awful constant spots/blackheads/whiteheads around my chin and have actually gone back on the pill to try and combat it.

One thing that has died a death over the last month or so is my appetite, I just can't face eating. I thought with hypothyroid it would be the opposite? It's such a learning curve - I went to my GP with a list of questions yesterday, I think they think I'm totally bonkers.

Iwearblack Sat 12-Jan-13 12:57:49

Don't worry blotted! It is very common and not life threatening or life- shortening! I was diagnosed about 2 years ago - went to docs as v tired and felt a bit 'fuzzy' in my head. Gave up booze for a bit as thought this might have been the problem, but when it wasn't went to docs... Sister has it too.
I was started on 25 mg of levothyroxine then had it upped at 3 month intervals and am now on 100 mg. sister is on 125 mg.
I feel much more with it and spots have gone (been plagued with these all adulthood - didn't have them as a teenager).
On the plus side - you will qualify for free prescriptions for life now!

Thanks so much for replying - do you mind if I ask what dose you're on? GP says they'll start me on a very low dose and bump it up but that it'll take months to get up to what I am likely to need.

I am just so tired. GP says that's probably down to my busy lifestyle, but my lifestyle has always been busy - if anything it's really quietened down! - and I've never felt like this. Need to nap after work, really anxious & so anxious that I'm being stupidly tearful at nothing. It's driving me bonkers!

Welovecouscous Thu 10-Jan-13 00:18:09

Not a hcp, but I do have an underactive thyroid.

You don't need to be frightened as its a pretty common illness which can usually be managed well once the dose of the replacement is right. It needs to be carefully managed in TTC/pg, but if you've finished your family that won't be an issue for you.

Afaik won't affect life expectancy.

Once your dose is right you will probably feel very much better - I felt much less tired, anxious and cold.

My GP took bloods last week to check my hormone levels due to horrendous periods, they phoned today and told me that I have autoimmune thyroiditis. GP says they don't want to start me on medication yet and I have to retest in 3 months but the list of symptoms he rhymed off are already present and seriously impinging on my life!

He thought I had PCOS and I was honestly expecting that diagnosis. I feel totally side-swiped by the Hashimoto's diagnosis. I don't know if it's going to affect my life expectancy, if I should be changing my diet, if I might have passed this onto the kids?

Can anyone help me? I'm pretty scared sad

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