Anyone like to give me a diagnosis?

[hashtagwhatever]

as I think the drs are at a loss.

last year I developed palpitations ,sudden weight loss all out of nowhere. was eventually diagnosed with hashimoto thyroiditis. since then I have a inner tremor/vibration feeling within hard to pin point more generalised
tiredness (which is not me usually)
bowel troubles diarrhea/constipation
achy joints/ muscles
random rashes
face pressure at times.
spaced out/giddiness. .

the endocrinologist says it shouldn't be like this.
Could I have another autoimmune disease, which one?

who would diagnosis the others? gp mentioned rheumatology but nothing since.

sorry bit of a essay. but have felt like thia for a year and feel like haven't been helped with what it could be.

tia X

I'm not a doctor, but my opinion is that one day you will die. Good luck with the journey in between now and then.

I don't know, but you must push for the referral to the rheumatologist. Some GP's get on with referrals and others need nudging.

Hope you feel better soon, sounds rough. Half the battle is knowing why of course!

Not needed, red.

No advice, OP, sorry

Did you have another thread about this? I'd never heard of hashimoto then twice in a week. If not then at least one other MNer has this.

I have no ideas for you, sorry.

I can't think of any reason why it's not possible to have two auto immune diseases though.

waffly, no it wasn't me hashimoto is a autoimmune thyroid disease.

Thanks, I will return to the gp and ask about the rheumatology referral. won't change much I don't presume but to have a diagnosis would be nice.

Red, bit odd.

If you have one autoimmune disease I think it increases your likelihood of getting a second. Sounds like coeliac?

Sarcoidosis ?

All these symptoms suggest that you are not currently on the right dose of thyroid hormone. Unfortunately there is quite a lot of cross over for some people and I cannot say whether you may be over or under medicated. Alternatively it may be that you are deficient in vitamin D, vitamin B12, folate or ferritin, all of which can make thyroid hormone replacement ineffective.

Your endo needs to work with you to get you to a point where you feel well and your symptoms go. This may mean treating by symptoms rather than figures and you may need to look for another endo who will do this.

You may have another AI condition, but my first guess would be that you need to get your Hashis properly treated.

It’s a good idea to get into the habit of getting the full details of your test results so you can map them against how you feel.

I have Hashimotos, could have been me who mentioned it, but would have been about a month ago.

Am no expert, but I do know that although considered 'not serious' this disease can play merry hell with your hormones, and a lot of people have it (and don't know). Hand to hold, and you can PM me any time for support, korma (but I cant give medical advice).

It sounds as if you are in a 'hyper' phase of hashimotos, with palpitations and diarrhoea, anxiety and weight loss, that alternates with being slow/sluggish, fatigue, weight gain and constipation. There is no rash with hashimotos, that is something else.

What kind of rash is it, OP? If on your face, what shape? (My doc said they ran other tests with the Hashimotos one, and one showed I'm susceptible to other auto immune diseases. I was browsing around the Arthritis UK website ('conditions') and my symptoms don't match, as I don't get a rash. Your symptoms sound like what I was reading on lupus. That is NOT a diagnosis, but if I were you I would want to know and go back to my GP for further tests.) As others have said, a rheumatologist would deal with this. But you would need to go back to your GP for a referral. Even if they can't treat it, you will have an idea of what is causing it, be able to deal with the symptoms better and find others online to compare notes with.

Someone else mentioned coeliacs. There is a lot said about the connection between coeliacs and hashimotos. I know people with coeliacs and they get consistent reactions to glucose (eg stomach cramps or diarrhoea). Not this unpredictable swing from one to the other. I do find eating less gluten helps me gain less weight, but it doesn't stop the other symptoms. That is just my experience, not any kind of proof of anything.

Fibromyalgia ?

You fit a lot of the symptoms.

Also, I asked my GP for lots of tiny doses of thyroxine instead of a big dose a day. This is working out, though I made the mistake of building the dose up too quickly and became hyper. (I felt so great though, compared to before, and it wasn't until we got the second blood test back showing hyperthyroidism that I realised I was actually causing the joint aches and sore throat and dizziness by taking too much!) Because I have such tiny doses, I've been able to bring the dose back down again, after a phone call with GP, instead of having lots more appointments. They prescribed me more tiny doses and I've brought it down to a small amount again. I haven't seen an endocrinologist yet.

I hope that helps.
I had hashimotos for a long time before getting tested, and can confirm it takes a long time to tweak the dose. I think we also have to accept that our thyroids are going to continue to try to work again, sporadically. I don't know whether that means we need to watch the symptoms and adjust our own doses slightly as our symptoms fluctuate. Something to discuss with a doctor.

I am not sure if it is worth mentioning, but I have every one of your smptoms bar the sudden weight loss and all (in my case) are caused by anxiety and all very common too. Do you think your initial diagnosis could have bought on a spell of anxiety?

Yes, fibromyalgia seems to fit, but often a lot of the symptoms lessen or go when on the right dose. They would only reach a diagnosis of fibromyalgia by treating the hashis until those symptoms have become stable, then (if symptoms persist) ruling out other disorders or auto-immunity with available tests.

the problem is I'm not being treated for the hashimoto. I have antibodies and inflammation in my thyroid but my levels go up and down so bouts of thyroiditis. basically till my thyroid dies completely there isn't any treatment.

the rash is on my neck and chest comes and goes its almost like a burny rash, if that makes sense? stings a little but isn't itchy as such. fibromyalga syptoms do fit as so do some of lupus.

the worst symptom is the vibration feeling inside it drives me crazy. and some days I ache all over. I have read about some patients with coeliac having the vibration.

it's such a guessing game

Remember that fibromyalgia is a symptom, nnot a diagnosis and the most common cause of fibromyagia is untreated, or undertreated thyroid issues.

Thanks RockinD, didn't know that but it makes sense.

Could the vibration feeling be palpitations hashtag?

Treatment for hashimotos is the sama as for treating hypothyroidism, and to take replacement thyroxine when your thyroid is pretty much on its last legs, yes. I'm glad you're not taking thyroxine yet, as too high a dose causes palpitations, so could cause a heart attack for someone already hyper. (You're probably aware of that.)

A friend of mine found the pain and anxiety of hyperthyroidism too much and went privately for iodine radiation treatment to make her thyroid smaller and make her hypo so she could be treated. This seems to have worked for her, but clearly not something to do lightly. (Not sure if age or plans for more children would feature in the decisions.)

Someone else I know had extreme hyperthyroidism and had a thyroidectomy. (Her dizzy spells were so bad she couldn't stand up, and there was obviously a danger that her heart would not cope.)

Another person I know with hyperthyroidism gets acupuncture which helps relieve a lot of the symptoms.

Don't know if any of that helps. It depends how bad things are for yourself, and how much of an effect it is having on your life.

Thank you yes that helps alot its so tiring and I'm rubbish at putting it into words to explain to the drs.

I've also had mri scan to rule out ms ect. the vibration seems to be more so on the left side its continously and the best way I can explain it is like when you're sitting on a bus the rattly vibration you feel.

There are the usual symptoms for Hyper and Hypo, but some people do not show these norms. I worked with a woman who was diagnosed with Hyper, but she put on weight. Even her DR was surprised, but it can happen.

I was very Hyper in my early 20s, and did get the palpitations due a very high pulse rate of 160 just sitting. Sweating masses, wasted away despite being ravenous and eating high calory foods constantly.
Eventually I became very weak and breathless.

Your Endocrinologist should have been able to make a diagnosis of Hyper/Hypo if that is what you have
I don't remember having a rash.

yes I have a diagnosis of hashimoto thyroiditis so I will go between hyper/normal/hypo. till eventually my thyroid dies and will stay hypo..

I don't think all symptoms are due to thyroid, neither does the endocrinologist.

Has the possibilty of lupus been considered?

it has yea I tested positive for ana but my other tests where clear. as I understand that doesn't rule out anything just means whatever it could be is inactive at time of the test?

Hashtag, I've just remembered something. There are foods you can eat which can affect your thyroid. For hyperthyroidism, low iodine foods are good, high iodine intake is not so good.

It is highly recommended by doctors and endocrinologist to avoid iodine, saturated fats, caffeine, sugar, wheat and diary products. At the same time the goitrogens (these are foods containing chemical compounds that block iodine absorption) should be increased. These are foods that inhibit the uptake of iodine work on the same principle as some of the antithyroid drugs, inhibiting thyroid hormone synthesis, release or action.

Goitrogens include foods of the Brassica family including broccoli (eaten raw), kale, kohlrabi, Brussel sprouts, turnips, cauliflower (eaten raw), rape and mustard. Non Brassica with goitrogenic properties include horseradish, cress and radish. Levels of goitrogens are highest in the seeds of those plants. Other goitrogens include sweet potatoes, millet, peaches and cabbage. Herbs and seeds which could help are: members of the mint family, including mint(s), borage, basil, oregano, marjoram, mustard greens, pears, almonds and spinach, lemon balm, rosemary, lavender and hyssop.

Sweetcorn is good too.

Lean turkey meat is good due to high levels of vitamin B.

Foods rich in vitamin D and zinc are also good for those with hyperthyroidism (because deficiencies of these can often go with hyperthyroidism). This would have shown up in blood tests.

It is also suggested to cut down on red meat (see if that helps) and gluten/wheat.

My friend (the one who had the thyroidectomy) was put on this diet by her doctor before her operation. it did seem to help a little.

thanks yegod. I will look into that.

I am just back from GP as again I've tonsillitis thinking of referring me for a tonsillectomy as its the 5 th time this year I have had it. also I was referred to Rheumatology back in July haven't heard anything so was told to chase it up

Good, glad you got to the doctor. 5th time already? That's a lot! Did he/she say why you might be having tonsillitis so often (low immunity?) or what could be done about the palpitations?

As you have hashimotos, and will get low thyroid eventually, bear in mind the opposite food types are better to help low thyroid (so for me foods rich in iron and vitamin C, iodine and selenium. No pears or peaches, less spinach and sweet potato and brassicas, more fish and shell fish, egg yolks, dried apricots figs and dates, brazil nuts and hazelnuts and coconut oil, less peanuts, walnuts or non-fermented soy products.) Diet won't make that much of a difference - if it did, our GPs would be telling us, but it does seem to make a little difference and it feels good to be doing something to help you body out!