Need advice!

Hi everyone, I'm new and hoping I'm in the right place!

So it all started with a lump under my jaw. Went to the drop in and advised to make an emergency app with GP.

Various bloods, chest x-ray, ultrasound, referal to endochronologist and referral for a biopsy.

My symptoms are - extreme fatigue

- hair loss

-yellow finger nails

- palpatations

-excessive sweating

-weight loss

-migranes

-leg pain

-very dry skin

- night sweats

The findings of the tests are - low t4 ( they went back and found I have had low t4 since 2013 but was never treated,doc seemed concerned by this)

- high TSH

-high antibodies

- enlarged lymph nodes

-enlarged thyroid gland

- abnormal thyroid tissue

- clear chest x-ray

The doctor gave me levothyroxin but this caused my lips to turn blue!

So I guess my question is does anyone have ANY idea whats going on with me? I'm so confused and I have 3 children and I'm struggling to cope with the symptoms and stress of not having a clue what is wrong. GP said he doesn't know because I'm showing signs of hypo and hyper? Is that even possible?

Any advice is really appreciated.

Also I have just had an app come through for ENT, will this be my biopsy?

Thankyou so much in advance and I'm sorry if this post isn't relevant.

15 Replies
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I'm sorry you are feeling so unwell and of course its a worrying time. Thyroid conditions are generally very treatable and worrying won't help but of course that's easy for me to say.

You will need to have all the investigations done to get a proper diagnosis and find out what the problem is.

Keep a copy of all your blood test results and ask the hospital for copies of any results of tests they do so you can keep track of things. There is often a lack of continuity between hospital and GP so keeping a record of all results is helpful both for yourself and informing various doctors of what tests you've had done.

Let us know how you get on.

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Thankyou for your reply!

I have registered with patient access so I have all results available to hand.

Any idea if my ENT appointment will be for the biopsy?

I'm trying to keep calm but new GP (I have just transferred to this surgery) personally rang ENT dept and endo while I was there because he said he was concerned that I haven't had treatments for 4 years despite bloods showing thyroid problems every time ive had a blood test and my appointment was through within days so although I am pleased things are moving quickly I'm worried by the urgency.

I just want a clue of what it may be so I can stop my mind racing, and was wondering if anyone has suffered similar symptoms. But your right I should try to keep calm and let them do their investigations.

Thankyou for taking time out to reply!

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If you have high antibodies, then that means you have Hashimoto's Thyroiditis - aka Autoimmune Thyroiditis - so, yes, it is possible to have symptoms of both hypo and hyper. However, be very careful when talking about symptoms to doctors, because they just have no idea! A lot of what they think are hyper symptoms, are in fact symptoms of both high and low thyroid. There is no sharp dividing line between the two sets of symptoms, they cross over a lot.

What happens with Hashi's, is that your immune system is slowly destroying your thyroid a few cells at a time. After an attack, the antibodies move in to clean up the mess, and that is when they are highest. And, as they die off, the cells dump all their thyroid hormone into the blood stream, so levels of FT4 and FT3 can swing wildly. And doctors have no idea about that, either! They usually accuse the patient of 'abusing their meds', and drastically slash the dose. It would be funny, if it didn't have such serious consequences for the patient! So, be aware of what can happen. The high levels are only temporary, and drop as the extra hormone is used up/excreted, and you go back to being hypo. But, in between times, levels can swing a bit.

The best way to keep things stable, is to take enough thyroid hormone replacement (levo) to suppress your TSH and keep it suppressed. This normally freaks out doctors, but you have to be firm. It won't do you any harm.

How much levo did your doctor put you on? Lips turning blue could be a reaction to the fillers in the tablet. It's not a response I've ever hear of before, but I doubt it's anything to do with the hormone content (T4). Ask your pharmacist to change the brand of levo you're taking.

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Thankyou for replying and making it so clear!

You clearly have a good knowledge of the subject and from what you have explained it would make sense why my symptoms are irratic.

I was put on 50mg of levo and was only on it 2 days ( not long enough to cause effects I would think) and was told to stop taking it because of my lips, so they cant blame my results on meds because ive never had any.

But what you have mentioned about hashimotos destroying the thyroid would that be why the tissue is abnormal and its enlarged? and could it be the cause of the swollen lymph nodes?

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patient access will give you blood test results from GP but not from Hospital so ask for those and keep a file.

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Yes, the Hashi's would indeed be why the thyroid tissue is abnormal and enlarged. But, I don't know about the swollen lymph nodes.

Did they just tell you to stop taking the levo, without any suggestion of anything else you could try? If so, very remiss of them! You are going to need something soon. As I said, ask to try another brand.

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Yes gp just told me to stop taking them, I have an appointment this week with the doctor after I have a 24hr ecg fitted, so I will mention different brands and make sure I'm on something soon because these symptoms are unbearable.

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I can imagine!

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I spoke to the doctor yesterday and they said it is a possibility that it could be reaction with the fillers!

They did an ECG anyway which showed heart flutters? So its being arranged for a 24hr ECG monitoring.

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So sorry to hear you have had such poor treatment.

Sadly it's extremely common.

Stick on here, keep reading and learn.

Many medics are absolutely clueless about thyroid and especially Hashimoto's

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Make an urgent appointment back with GP and ask for vitamin D, folate, ferritin and B12 to be tested.

Highly likely these are very low, and may need supplementing alongside getting started on Thyroid hormone

50mcg is the standard starter dose, but you have been hypo a long time. It may have to be introduced much slower.

25mcg dose, or sometimes even cut that in half and take 12.5mcg

Getting vitamins corrected will help too

But also poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

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Wow! so can you not just be my doctor slow dragon? ha

I will take a look at the links and introduce and eliminate things where needed and hopefully this helps! I'm so glad I'm here I feel like I'm getting knowledge on self help aswell as medical advice and I'm having a much better understanding of whats going on.

So will my biopsy be to confirm hashimotos or autoimmune disease?

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Is the lump like a broad bean size slightly to one side under your chin?

If so that's a saliva gland. It can swell up with Hashimoto's (mine's still swells up even now!)

But they should scan thyroid too. Hashimoto's can just turn whole thyroid granular in appearance or you can get a few nodules too

Feeling hyper and hypo at same time is typical, especially early on.

Getting on to steady dose of Levothyroxine to bring a TSH down, improving low vitamins (assuming they are low) and pretty likely strictly gluten free diet will help too

Hashimoto's is as much gut related as thyroid.

Levothyroxine has to be introduced slowly, retesting after 6-8 weeks on each dose. Increase in 25mcg steps maximum, this continues over many months until TSH is around one and FT4 towards top of range

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

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Thankyou so much for the info.

The lump has been confirmed by ultrasound as an enlarged submental lymph node so i know its not a salivary gland but not sure what else it means. I guess the biopsy will tell me.

But its great knowing I can self help in some way and not be totally dependant on doctors to make me feel well, that and being able to get advice!

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Lots of patients have found Teva brand of Levo difficult to tolerate. (Unless lactose intolerant, in which case it's the only one that is lactose free)

Activis or Wochart are popular

Mercury Pharma is common, some find this good others can't tolerate it.

We are all different

Once you find brand that suits you, best to stick on it if at all possible.

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

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Linda2611,

Tell your pharmacist what happened when you took 2 tablets and ask for an alternative brand of Levothyroxine. SlowDragon has listed them above.

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